Life loving people (they are us)…

bunge bay summer table

-4:43 “Your average person that gets Lyme Disease is an outdoor active mover and shaker lover of life type a person, and that’s why they got the disease…”

Thanks to Annette’s Lyme Page on FB! www.facebook.com/corcovado.stars?fref=ts

 

 

visual food…

Sometimes happiness happens…

blue berries along the pathSometimes I have to remind myself…

…that I have fought along hard fight to stave off the effects of this illness. Along the way I was mostly happy. Just last night I shared with my daughter the sound of my laughter and my voice on these videos that were taken 4 years ago. We were visiting my mom at her summer house in Tilting, Fogo Island, Newfoundland. Although I was sick, I was still able to get around, and I hadn’t lost my voice yet. I love islands, northern islands, coastal California islands, and tropical islands. Fogo Island has a special place in my heart. It welcomed me since I was ten years old. The island is so beautiful – there is no strip malls, movie theaters, and very few restaurants. People are so authentic and warm on the island. I took pleasure in sharing it with my kids…

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Newfie pony foal – Change Islands

I share this with you because sometimes we need smiles and laughter to give ourselves a break…

Joe Batts Arm see-saw, Caroline and Josh

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Fogo Island music – Aaron Cobb, Josh, Arielle, Mom and me

1arielle&chester

 

 

humpbacks off of Joe Batts Arm harbor

mom and dick at nicole's_edited-1

I hope I brought a smile to your face, and hopefully brought back lovely memories of your own!

Love to all…

 

Sand Shark….

Sand Shark….

 

Sand Shark!!!

Sand Shark!!!

 

 

 

 

 

 

 

 

 

 

 

I am still here

visby view of the baltic thru wall When my voice left me, the few friends that had stuck by me all those years that I have been sick, started to fade away. I am guessing that they think that it is hard for me to talk on the phone or in person. No girlfriends are calling me up and casually talking about their lives. I was always the one they turned to when they needed a shoulder to lean against. I am still here. I am a great listener. I sometime wonder if I was in their shoes – would I be put off by me? Would I know what to do?

Whenever I see them I know they still love me, only in a different way. I feel like they pity me as a disabled person, and don’t connect with me as one of their peers. I reach out to them and tell them to call me or text me or message me, and I will listen, but they don’t. Perhaps they feel like they don’t want to burden me with their concerns. This disease is so isolating. That is why I am happy to connect with other people who share the similar experiences.

 

I am developing slowly new friends that are fellow journeyers of Lyme Disease. I treasure the visit with my friend Cindi who came over and brought me lunch. I treasure the visit from my friend Melinda who brought her new love to meet me. I treasure the visit I had with my friend Kristine. I always treasure when I see my friend Karen. I treasure Cousin Mike who always supports me. They are the friends that try to stay in touch with me.

IMG_0776A miracle has occurred. My best friend met me when I was I  sick, (not as sick as I am now) and he married me. Treasure your friends that stand by you…

 

 

A note about Rocephin

OLYMPUS DIGITAL CAMERAI met a young mother in the waiting room a the infusion center. It was like looking in the mirror twenty years ago. She was clearly unwell, thin, and upset. She has Lyme Disease. She had to go through the same route practically all of us have to go through – misdiagnosis, refusal to treat. She finally found a neurologist that would treat her two months (!!!) with IV Rocephin. He is not a LLMD and he started her off on straight drip, not timed. She was rushed to the emergency department because she has a “heart event.” She described it as a intense burning in her chest and heart pain. After she gotscan0004 out of the hospital she returned to the infusion center to get 2grams of IV Rocephin over 30 minutes for only two months. I could recognize her look in her eyes that said “this isn’t supposed to happen to me. I’m a young mother and I have to take care of my kids.”

I had the same thing happened to me the first time I went into to get the IV treatment. The nurse stopped the IV treatment and gave me Benadryl, and had an EPI pen on stand by. She phoned my doctor. Fortunately, I have LLMD, and she identified it as an allergy. She prescribed IV 25 mg Benadryl right before the Rocephin drip, and 25mg on stand by. She ordered the  IV Rocephin drip josh in New Jerseyto be 90 minutes long for 2grams. And I have carry Benadryl and an Epi pen always. That did the trick. It is great to have a doctor who knows what they are doing. Unfortunately, my voice wasn’t working that day as I tried to tell her this. She didn’t understand me and she had to go. I thought I would see her again but I never did.

 

 

 

 

 

 

Out Of Touch (Interactive Post!)

I haven’t had any backlash on sharing my blog, but it makes me feel vulnerable.

My Color Is Lyme

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Has anyone else found that longs years of illness have left them out of touch with reality? I have been giving this a lot of thought as of late (but not for the first time over the years) how illness leads to isolation and isolation changes how you go about doing things and how you go about doing things changes how you think of things and how you think of things changes your perception…….

I am doing my best to articulate all this but I am not sure I am doing a very good job. I think there is a separation between the chronic illness sufferer and the rest of the world that creeps in over time. It is like a slow ebbing away that you do not notice until it is huge, and you wonder how you got so out of touch. I have observed that is why there…

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Neurological Lyme: So You’ve Known Me Your Whole Life And Can’t Recall My Name? Also the Lyme-ALS & MS Connection

My Color Is Lyme is a great blog for information on Lyme…

My Color Is Lyme

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Lyme Brain. If you are a Lyme sufferer whether it be chronic, acute or mild, you probably know what this is. It usually involves minor memory lapses, trouble reading and focusing, compromised word recollection, and dyslexia. These symptoms can also be very severe, thankfully I am in the category of the former, and getting much better.

Since the Lyme Spirochete and secondary infections like Bartonella can literally effect anything and everything in your entire body, it makes sense that it can wreak havoc on your brain. I think this aspect of the illness is harder for people to understand; You just end up feeling dumb when you can’t spell words you have known for years, or struggle with simple math problems, and since those around you can’t “see” the disease effecting your mind, it may be hard for the friends, family, and coworkers of Lyme sufferers to understand what is…

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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”

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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!

 

 

 

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