Doctor's Apt.

Yesterday i had another visit with my Lyme Literate Dr. She was happy to hear that I'm doing well on the Salt/Vit. C protocol as well as the liquid oxygen. She said sometimes people who are more sensitive respond better to the natural approaches then to the antibiotics. However, she also said that just because I am feeling better these days doesn't mean that I am actually getting better, but that there's a trade off and sometimes being able to live and enjoy life is better then suffering through the harsh antibiotic treatments. sShe's willing to gamble with the natural stuff a bit longer because she likes how well I feel.

My CD-57 test results went down again from 60, 69, 59, to 45. She said that sometimes you'll feel better long before your immune system recovers which is what this test is checking for. She said that for now we're going to basically ignore the results and go with how I feel unless we get another really low one when I return in 2 months. So wish me luck with this salt thing. I really hope it is working because while it's nice having more energy these days I'd really like to be done with all of this and be able to work, play, and live like I used to. I'll take the energy for now if that's the best I can get and I'll keep on keeping on. So the short version is things are the same except I'm going to add the Cat's Claw back in as an additional method of antibiotic.

WOLF School

Last week I had the perfect opportunity to return to WOLF School as a naturalist. I had 15 really cool kids from a Montesorri school come and visit. We had the camp to ourselves, it was really nice. On Monday I took them and their many awesome parents on a short hike into the redwoods and to the rhododendron garden at Monte Toyon. They really enjoyed getting inside the hollow redwood tree, seeing banana slugs, and learning about the albino redwoods. It was an early day for me and a long day, and I had fun getting back out there on the trail and playing with kids. I was so tired by the end of the evening I almost had a total melt down. I just don't have the endurance to move around that much these days.
Then, on Tuesday I met them at Natural Bridges State Park Beach. We collected beach treasures, made sand creatures with interesting adaptations, went on a solo hike, made friends with poison oak - a lot of poison oak, and visited the tide pools. That was a lot of walking for me and my knee started to hurt. I was grateful when it was over, but also would have loved to spend a whole week with those kids, they were really neat lil ones.
It was really nice to be out there doing what I love. I wish I could be doing it all the time, but after two days it was clear that I'm not quite ready to head back for reals. I will be however helping out with running a program in May. That should be easier because I won't need to be on the trails which will help me to conserve my energy. I hope the weather is really awesome when I go back. Camp Rocks!

Donate Button

Check out my cool new donate button over to the right -->
My wonderful friend Jeff did the behind the scenes work so that you can directly donate to my Lyme Treatment Fund. Thank you Jeff!

This couldn't come at a better time. I've run out of short term disability money and am not strong enough quite yet to go back to work. I'm working hard to get social security disability until I can go back to work with out killing myself, but the system has a lot of red tape and it's taking a long time. So in the meantime, I'm working on fundraising with my good friends Janine and Jeff who also have Lyme Disease to help us all ease the burden of Lyme related expenses.

We're having two Lyme Awareness yard sale fundraisers and looking into getting a band to play a benefit concert. May is Lyme Disease Awareness month and we're looking into hosting an information/fundraising both at the Saturday Market in San Lorenzo Park sometime in May.

Here are some ways you can help us:

- donate directly by clicking the donate button at the top of the page.
Any amount is helpful, even $5 makes a difference.
(there is also a button on Jeff and Janine's page at http://cruzjones.blogspot.com)

- donate your unwanted items to our yard sale fundraiser

- stop by our yard sale fundraiser this weekend Sat. March 26th to say hi and learn
more about Lyme Disease

- share this blog with your network


- cash in your recycling or that change jar you have laying around and donate it

- call or stop by and say hi

Thanks again to everyone who has supported us in the past and continue to offer support in so many important ways. We are lucky to have such a great community to help us get through this.

THANK YOU

Helping Friends With Lyme

Hi friends and family,

As many of you know, I was diagnosed with Lyme Disease and related co-infections about 8 months ago. It's been an interesting journey since then. Every day is different, some days are good and others not so much. Lately, things have been looking up, which is a nice change. I've found a Lyme Literate Dr. who is estimating that my treatment will last 1-2 years. One of the most frustrating things about Lyme Disease is the political battle surrounding the diagnosis and treatment of Lyme. The short story is that because of some poorly written guidelines most Lyme patients must pay for their Lyme literate Drs. and treatment out of pocket. In 2009, we spent over $4500 out of pocket, on medical expenses. With me not working, that's been a challenge. I'm so thankful for Emiliano's support through all of this and so glad that our insurance is covering prescriptions so far. Many friends have also stepped up and offered financial support which helped cover a lot in the beginnng. However, i'm not the only one who needs support.


Recently, my good friends Jeff and Janine Jones have also been diagnosed with Lyme and an assortment of co-infections. They are currently looking for a Lyme literate Dr. as mine is not accepting any new patients at this time. They are happy to finally understand what has been ailing them for so long and daunted by the sudden onslought of medical tests, Dr. fees, and prescription costs they will soon face. They currently do not have health insurance and will be paying for everything out of pocket even prescriptions, for both of them.

We've decided to raise funds for the three of us by hosting a 2 weekend yard sale/ Awareness Event. March 26-27 we'll be at my house on Darwin St. in the Seabright Area of Santa Cruz. Then we'll take all the left overs to their house and give it a second go round April 23-24th. I'm hoping that we can raise enough $ to send them both to a Lyme Literate Dr.

You can help us out by donating your unwanted items to our yard sale. Whatever you were going to take to good will please send it our way instead. Every little bit of help means a lot for us so, thank you for what you have already done and for what you may do to support all of us in the future. It means a lot.

To find out more about my journey with Lyme Disease check out my blog.

You can also support our cause by shopping with String Bean Studios on etsy or at local craft faires. Check out the String Bean Studios Blog for date and events.

For more information about Lyme Disease visit www.lymedisease.org

Thank you for your friendship, understanding, and support.

Keri

I Have Lyme and I'm Lucky

You might be asking yourself why I think I'm lucky to have Lyme. Well, I'm lucky because of all the wonderful things that have happened since I figured out that I have Lyme Disease and I wanted to share with you some of the things I appreciate and feel grateful for that never would have happened if I hadn't discover that I have Lyme.

I'm lucky because:

- i know what is causing my aches and pains, and various other symptoms. Some people have a really hard time getting diagnosed and go for decades not getting the diagnosis and treatment they deserve.

- i have a wonderful friend Natalie aka. Squirrel who was so generous and paid for me to see our Naturopath who first diagnosed me with Lyme.

- there are Lyme Literate Drs. near by and I had several to choose from and was able to find a good one only 20 minutes away.

- we have insurance that pays for some of my needs.

- i have a wonderful husband who works really hard at several jobs to pay for just about everything we/I need. I can't imagine what my life would be like if I didn't have him. He's what is getting me through this.

- we can afford most of the natural treatments that help to ease the symptoms and aid the healing process.

- i have figured out that I'm not a wimpy person who can't do as much as other people, I'm not getting older yet, I'm not loosing my mind, and the pain is real because I'm sick.

- i have discovered that there are wonderful people in the world who will step up to help others even if they don't know them very well.

- i have discovered who my real friends are and who I can really count on in times of need. And, when I needed money they stepped up to the challenge and dug deep into their pockets and gave.

- i have made lots of new wonderful supportive and amazing friends, like Janine. Too bad so many of them live far away.

- i have discovered my inner artist and my talent for creating jewelry. I finally feel like a creative person.

- i have learned to like new foods. My limited diet has created situations where i have had to be more willing to eat strange or seemingly yucky things and consequently discovered they're not so bad after all.

- i have learned a lot about how the body works and what herbs are good for healing a variety of ailments.

- because i have a situation where I can survive with not working for a while and focus my energy on healing.

- it could be worse. While this is by far the worst thing I have ever experienced, it could be much worse. I can still walk and talk, and do many things. And I'm not dying. I will survive this, and I will get my life back. This too shall pass.

For all of those things and many many more, I AM LUCKY.

Salt Update

I've been taking salt/vit. C and the liquid oxygen for 4 weeks now. It's been really good. I have felt more energetic and happy and generally great for the last few weeks. It's been really nice and I've been getting out and about by myself and doing a lot more. I've been driving a bit, but only when I feel really good and the traffic is light. I've gotten reinspired again with the jewelry business and have been making new items, selling more on etsy, and getting ready for upcoming summer and fall shows.

As predicted by the salt/C protocol a herx reaction is supposed to occur at about the 4 week mark, well here it is. The last few days, I've been feeling run down, my body hurts more, I'm not as motivated to get out of the house, and the late nights are back in full force. I know that all of this means it's working and I'm killing off the bacteria during their reproductive cycle. I hope this hurx doesn't get much worse then this, cause I feel grumpy and hurty and I want it to stop.

One of the hardest parts of all of this is the low periods after I feel really good. It feels really good to be getting my life back and then to all the sudden have it taken down a notch AGAIN is hard. I sometimes wish it would just be a gradual upward trend with out these setbacks. Hopefully, this new treatment will provide improved test results and prove that it is worth the pain.

Complete List of Symptoms

I have also had LOTS of people ask me what ALL of my symptoms are so I've copied a master symptom list and then erased the ones I do not experience. What you see here is a list of symptoms that I have experienced at some time in the last several years. I often experience several at once or per day, but never all at the same time. I'm really happy I don't have the really bad and scary ones, like loosing sight or the ability to speak.

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE
Abnormal sensitivity to cold
Allergies (nasal, other; new, increased or worsening)
Canker sores
Chills when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever
(99.5-101.5 F / 37.5-38.6 C), chills
Increased susceptibility to infections
Low-grade fevers
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Thirst, increased
Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
and body temperature; low body temperature (below 97.6 F / 36.4 C)

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart pounds so hard it shakes body, bed
Sighing, frequent, not related to mental/emotional state

CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC
Alcohol intolerance
"Brainfog"; inability to think clearly
Diminished reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing fluctuations (sounds fade then return)
Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity

Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Touch or weight of clothing on or against body causes discomfort or pain

COGNITIVE FUNCTION
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (such as, what to do with the shampoo when you arestanding in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed speech
Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
Word-finding difficulty
Using the wrong word

DIGESTIVE/HEPATIC
Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food intolerance
IBS
Increased appetite
Nausea
Stomach ache, cramps
Vomiting
Weight gain or loss

EQUILIBRIUM/PERCEPTION
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of balance when standing with eyes closed
Perception (not quite seeing what you are looking at)
Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them

EYES/VISION
Blurred vision
Drooping eyelid
Eye pain
Flashes of light perceived peripherally
Oscillopsia (image jiggles)
Pressure sensation behind eyes
Red and/or tearing eyes
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes

HEAD/NECK/MOUTH
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes
Pain in ears, palate, gums
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches

MUSCULOSKELETAL
Arthritic pain that migrates from joint to joint
Carpal tunnel syndrome
Joint aches (arthralgia)
Joint pain, without redness or swelling
Loss of tone
"Lumpy, bumpy" long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness
Reduced range of motion
Stiff neck
Writing causes pain in hand, arm shoulder

PAIN SYMPTOMS
Abdominal pain
Chest pain
Generalized pain
Shooting or stabbing pains
Painful tender points

PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS
Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Depressed mood
Feeling helpless
Crying for no reason
Inability to enjoy previously enjoyed activities
Irritability; over-reaction
New phobias/irrational fears
Panic attacks
Personality changes (labile, irritable, anxious, confused, forgetful)
Phobias (irrational fears)


SENSITIVITIES
Acute or abnormal reactions to medications
Alteration in taste, smell, and/or hearing
Chemicals (alcohol, medications; lower tolerance for)
Food sensitivities
Increased perception of and sensitivity to noise
Light sensitivity
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)

SKIN/NAILS
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dry, itchy skin
Easily scar
Vertical ridges or beads in nails

SLEEP SYMPTOMS
Abnormal brain activity in stage 4 sleep ? ? ?
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep

UROGENITAL/REPRODUCTIVE
Decreased libido
Frequent urination
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Other symptoms worsen before start of menstruation
Worsening of PMS

OTHER
Activity level reduced to less than 50% of pre-onset level
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Fatigue, prolonged, disabling, made worse by exertion or stress
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Weight changes (usually gain)


COMMON CO-INFECTIONS AND DISORDERS
Babesiosis
Cytomegalovirus (CMV)
Epstein-Barr virus (EBV)
Ehrlichiosis
HHV6
Mercury or other metal toxicity
Mycoplasma
Systemic mold and/or mold sensitivities