Wednesday, November 1, 2017

Our Story

November 1st, 2014

It is the day after Halloween, and my 13 year old daughter, Romy, is at dance class.   Yesterday's big day of socializing, eating candy, and trick-or-treating in our hilly neighborhood did not cause any blip on the radar.  The day before, we opened the mail to see her grades for the quarter - all A's in a typical public middle school.  Tutor-free, and no modified curriculum as an 8th grader.  

I sit here and reflect as I often do in the fall, comparing the school year to years past. 
Feeling overwhelmed with gratitude for this gift of having our daughter in our lives.  She is our little burst of light and love.  She has always been that way, so disarming. Even at her sickest, she could eek out a sweet smile, or weakly laugh at something funny.  Simply everything is better with her here with us.

Diagnosed at 7 yrs old, Romy is in remission from Chronic Lyme Disease.  Semantics aside, it means she pretty much lives a typical teenage life.   Amazing from where we started.  I am here to say that remission can happen.  A high functioning life is possible!  

Today Romy spends approximately 12 hours a week at the dance studio working very hard at a professional level.  She takes all genres: tap, jazz, contemporary, hip hop, and ballet/pointe.  It's her passion and savior.  She trains and rehearses group and solo routines for competitions within the Pacific Northwest.  During competitive dance season, she can dance up to 8 hours a day on back-to-back weekends. Most of Romy's down time is spent resting up for dance or recovering from dance. 

How did we do it
Nothing you don't know about already.  An individualized, dynamic protocol of antibiotics, herbs, supplements, homeopathy, organic GF whole foods, exercise, sleep, detox, and monitoring by mom and LLMDs on a regular, frequent schedule.  Cornerstones were long-term antibiotic therapy, the Cowden, and homeopathy.  

At the beginning, antibiotics were the ONLY thing that stopped the progression of the disease(s).  Trust me, at the time I was an organic, garden growing, gluten-free, anti-vaccine mom in homeopathy school.  You can't get more anti-antibiotic than that (or more cliche). The love for my daughter and panicky drive for me to bring her out of crisis had me consider everything.

Like so many people, I eventually figured out this was Lyme disease on my own.  My daughter wasn't getting any better with pediatricians.  Three pediatricians later and still nothing. My instinct was still screaming at me that something was truly wrong.

I had mentioned Lyme Disease several times to these people.  I mean...spring...Connecticut....fevers...flu-like symptoms that are recurring...seems like a very strong candidate for the cause of my daughter having so many "flu bugs".  I had about enough of them when late July hit.  A flu bug in July?  Really?

Lyme seemed pretty logical to me.  I began researching, reading, attending health seminars, and finally attended one about Lyme disease.  I'll never forget how I felt after I circled numerous symptoms on their checklist.  

I saw fear in the eyes of that last pediatrician when I stomped in and declared, out loud in the lobby in front of everyone she must have Lyme disease!  I saw right then that they knew, but did nothing. Later, I would learn about the politics that prevented my daughter from getting proper treatment that could have avoided the years of suffering she experienced.

I devastatingly realized that it was up to me, not our pediatrician, to figure this out.  I had to do something fast.  We had wasted months, and my daughter was getting sicker and sicker each day!  My research brain turned all business.  I searched for kids that got better.  I didn't give a crap about politics.  I am not a cause kind of gal. I just blindly wanted my daughter to get better.  And the way to do that, was follow that white rabbit. I spent two weeks on the phone and online connecting and scouring all over the country for people that got better.  At the end  of my initial search, my Better list had about 30 parents on it. 

Pretty much everyone I spoke to on my Better list used antibiotics at some point of their recovery.  It gave this granola gal pause, but I was interested......They also used LLMDs, some "controversial minority group" that practiced an aggressive standard of treatment.  These LLMDs specialized in kids or were at the top of this small list of practitioners. I continued to hear the same doctor names and the same advice, that kids were very different.   I weeded out the cases where it was caught early or free of co-infections. 

I figured out who was at the top.  Who founded a treatment? Who wrote this book?  Who trained that doctor?  I scoured for the source of knowledge and experience and worked my way down from there.  My wake up call was having two big wigs tell me to go on antibiotics.  One was a renowned homeopath!  They told me it was too late, and antibiotics were the only way to stop the progression and give her a chance to heal.  

After 6 months of failed alternative treatment protocols, I had to leave my comfort zone and hit that short list of docs.  I began to pursue, pay deposits, and call on a regular basis until we had appts.  Finally, we began real treatment.

So YES, we used antibiotics, and lots of them.  Lots of different ones at the same time to combat different forms and different diseases.  And yeah, she was only 7yrs old and 60 lbs.  We knew she had to get worse from the die-off of all of these organisms.  Crazy-making for sure.  But what were we to do?  On one hand, we had a child waking up almost every morning with a new or worsening of a symptom.  On the other, we had no one but these docs offering us a way to stop the progression.

We didn't know if she was going to make it at one point.  Lots of close calls and sleepless nights and months filled with pain.  Protocol after protocol, doc visit after doc visit....finally it seemed this train was slowing down.  No new symptoms for a while.

Then it happened.  One morning during our routine symptom check, she held up her little hand, smiled, and said her fingers didn't hurt.  My thoughts immediately jumped to Hering's Law from my homeopathic studies.  It says healing starts from within out, from the head down and in reverse order as the symptoms have appeared or been suppressed.  I remember that day like it was yesterday. Fingertip pain was the most recent symptom.

She was getting better.  

Dynamic, individualized, integrative protocols
Was it just the antibiotics?  Nope.  It was everything working together. So why am I going on and on about antibiotics?  Because I want to share what I have learned through this process.   Our culture teaches us to fear antibiotics OR anything outside of western medicine.  Both extremes of "natural" and pharmaceutical treatment.  I also learned how there is no one-size-fits-all, and that integrative protocols addressing all aspects of this disease(s) results in the best outcome.  This concept is opposite and lives outside of the ivory tower.  This way of thinking is not mainstream.  

I get it.  Truly.  It is a hard thing to wrap our heads around for sure.  Especially when there are extraneous factors that distract us from listening to our intuition and being open.   Blindly listening to just our pediatrician or our neurologist is a thing of the past. It's SCARY to question what our culture teaches us.  What we grew up with.  What our spouses and neighbors tell us.  But modern living is far too complicated.  No one can know about everything anymore.  

Modern living demands being open and recognizing we are all individuals toting our own special blend of disease, metabolic deficiencies, lifestyle factors, genetics, toxic exposure, emotional baggage, what have you.  Modern living demands that we partake and manage our own health.  Every day there are hundreds of articles published on diseases.  No way our practitioners can be experts on everything like in the old days.  As a result, we must take ownership of our health and research and read every day.  We must bring our knowledge to the table.  

We think "I want to do something natural."  "Antibiotics are really bad for you." "Antibiotics are too strong."  And my favorite, "I had a really bad experience with antibiotics.  They don't work."   I am here to say these viewpoints may or may not apply to your blend of disease state, or what phase you are living in.  My daughter worsened for 6 months in search of something natural to stop the progression. I get it. 

I know of something to fear that is far scarier than antibiotics, and it's called Chronic Lyme Disease.  In the 7 years leading up to her diagnosis, Romy had never needed any pharmaceutical medicine for any reason.  Well, we sure made up for it and then some.

Not everyone can tolerate antibiotics for a variety of reasons.  My nephew cannot handle them because his case is complicated by Mold.  The Mold problem causes the antibiotics to not work, along with too much inflammation and detox dysfunction at this stage to be effective.  Antibiotics only make things worse in this phase of his healing path, not the common mistake of worse being a herx, which is what you want at the appropriate level.  At this stage, my nephew is improving on herbs as his bug killer.  

Sometimes antibiotics don't work because they are the wrong antibiotics.  Or, your protocol does not provide the support needed for them to be effective with your specific microbial load and metabolic factors.  It's slim pickens when it comes to effective treatment for this formidable disease that gets no funding or recognition.  This ain't cancer.  And yeah, I went there.  

Our other cornerstone was homeopathy.  Homeopathy was the ONLY modality I found effective in reducing agonizing pain in our 2nd grader.  At each stage of my daughter's illness, homeopathy was there for us.  As a constitutional, as an allopathic treatment, as detox, as medicine for acutes.  We used single remedies, blends, nosodes, and sarcodes. 

After the microbial numbers were reduced to a more manageable level, herbs began to work.  We were able to utilize the Cowden Protocol on top of antibiotics.  Wow, that was a big game changer.  Romy lost about 10 symptoms in 1 1/2 months.  Then Byron Whites, Beyond Balance, Buhner, and others.  After that, we focused more on rebuilding and repair with supplements and other therapies.

Each stage of illness required a stealth, dynamic protocol targeting the priorities assessed.  I am fortunate for what the universe provided so that my daughter could get the help she needed.  Most people don't get to see any of the renowned, truly experienced doctors.  Most people aren't aware of all the other components that make up an effective protocol.  Most people don't have the means. 

Where we started
Our Halloween with Romy 6 years ago seems like a lifetime ago.  So much suffering, learning, and healing has occurred since then.   She could not walk a straight line on her own, and got a "high" from eating any amount of sugar.  Diagnosed the month before, we were in that crisis phase.  We didn't know what this was or what we were going to do. 

Dr. Richard Horowitz diagnosed Romy at 7 yrs old with Chronic Neuro-Lyme Disease, Bartonella, Babesia, Mycoplasma, Chlamydia, EB, HV6, Strep, and multiple food and environmental allergies (IgE).  She transmitted Lyme from me in utero, as well as receiving multiple exposures throughout her young life.  Romy was also under the care of Dr. Charles Ray Jones for a period of time.  

I ran out and got the whole family tested once she was properly diagnosed.  My son and I were both positive.  Turned out she had congenital Lyme, on top of several additional exposures while living in Connecticut.  We moved across the country as soon as we could.

Lyme being the man behind the curtain, it shut us down. Romy lived with 26 excruciating pain areas all over her body - muscles, joints, literally any skin surface was painful to the touch.  We almost lost her to a Lyme-induced seizure on New Years Eve at the beginning of treatment.  Romy had to be carried or transported in a stroller, shopping cart, or wheelchair in order to prevent fire-like pain shooting up from her calves.  This pain was so sharp and agonizing, she would scream.  So, we learned her limit was about one block of walking without triggering this pain.  

Full-body tics would prevent her from sleeping.  At one point she could not run but "gallop" and drag her foot behind her.  She experienced  facial tics and vocal tics, very swollen/painful throat, fatigue, sensory integration dysfunction, food/environmental allergies, thermoregulation problems, blurry/sandy eyes, encephalitis, and inflammation in every joint.  Paranoia, clinginess, night terrors, OCD, aggression, fears, anxiety, and poor executive functioning.  She had a pounding, frontal headache for over two years.

When she was first diagnosed in 2nd grade, she was too sick to attend most of the school year. She was unable to concentrate or do anything other than rest and watch tv.  For two years, she couldn't sit in a normal seated position in a chair, as it would trigger pain.  So, Romy would stand or sit on top of her legs for short spans of time.  Attendance was spotty through elementary school.  The social cost was most challenging in 5th grade.  Navigating through the latest social landscape after missing school for 3 weeks (or 8 months) from a relapse was stressful.  Friends go on with life, as that is life.  

Just a few years ago, her eyes would "skip" words when she read, and thoughts would race ahead of her, causing recall to be difficult.  She experienced ADD symptoms, including a visual closure deficit, and the inability to regulate her processing speed.  Her mind would race too far ahead while reading, or slow down computing math problems.  As a result, homework took 3 times as long to complete.  She benefited from tutoring for two years to help her with gaps of knowledge missing from school absences.  On occasion, she will repeat a thought to someone, not computing that she just said that a few minutes ago or the previous day.  

Romy is on a maintenance protocol of herbs, homeopathics, Reiki, Accunect, nutritional supplements, and a healthy diet and lifestyle.  She's been off antibiotics for over a year, and has not had a relapse since last summer.  She takes nightly baths with ingredients such as epsom salts, minerals, clay, and essential oils.  We grow vegetables and cook almost every night.  Romy's passion and life saver is dance.    

She was on antibiotics for 6 years along with the rest of her protocol.  She continues to be monitored every 2 to 3 months by our LLMD, Dr. Susan Marra. Dr. Marra and her integrated approach brought Romy to the finish line.  She truly knows my daughter.  At each phase of the disease, Dr. Marra was there for us with her cutting edge wisdom, experience, and training.  Dr. Horowitz and Dr. Jones were Romy's first doctors, and were able to stop the progression and began reversing the disease and started the healing process.  Lucky girl.  

Residual Symptoms
Residual symptoms are occasional food and environmental sensitivities.  She will randomly have an allergic reaction to an everyday food, even a soap or other substance.   Weather change and a high pollen load are common culprits.  Even air conditioning, hairspray, and perfume can set her off if she is already taxed.  The symptoms are typical allergic symptoms (flushed face, bloodshot or glassy eyes, mild fatigue, occasional stomach cramping).  These usually occur when she is worn down or has an acute illness such as a cold.  The reaction can last a few minutes up to a couple hours.   

One day it's the deli turkey she's eaten for years. Another day it's the wooden chair she's sitting in at an appointment.  Cayenne pepper, yogurt, her GF bagel.  It can be anything.  It's like a lone soldier randomly firing a gun in a war torn city, not knowing the war is over.  That autonomic nervous system thinking the war is still on. 

Bioset and Accunect can often reverse the reaction almost instantly.  Reiki treatments on the spot also help.  Romy can self-treat with Reiki which is so handy at school, or receive a treatment from yours truly.  I am at the Master level for Reiki, and also practice homeopathy and Accunect.  I am grateful everyday for learning how to practice the treatments that help my daughter.  

Romy is hypersensitive to stress which can trigger her nervous system to cause throat tics, and have excess fears and worries about daily life.  For example; listening to the news or watching a tsunami documentary in science can trigger the "flight or fight" response, causing her to want to leave the building.  Flying and altitude change also trigger an immune response, depending on the stress load.  Even a water ski boat ride is taxing on her nervous system.  

The last 3 years have been mostly symptom-free aside from occasional food sensitivities a few times a month.  However, Romy has had relapses at the beginning of each summer lasting anywhere from 3-6 weeks.  Worn out from the intense spring school demands and dance competitions and recitals, the Lyme gets an opportunity.  Romy experienced concussion-like brain fog and sight/sound sensitivity in June of this past year.  The prior two years she experienced blurry and double vision and facial tics. Credit was given to Bartonella.  Relapsing is expected with this disease with no cure.  

When relapse occurred, our LLMD went back to the drawing board.  Sometimes the outcome would be to put her back on antibiotics if she was off (we had two failed attempts to take her off).  Other times it would be to try a completely different protocol, or one that worked very well for a long time. Each time was a unique event, and treatment was based on Romy's history and what was presenting before us.

*Be open to anything and everything - from Western to Energy Medicine and in between.

*Core protocol is always the priority.   Everything else comes after that. Don't get distracted by things that are not addressing your goals at that time. 

*Record data each day: symptoms, flares, food, protocol, and daily events using a tangible, measurable system.  Summarize monthly to share with practitioners, family members, and others as necessary to implement protocols and support your child.

*Invest in the best possible care.  

*Do what your doctor says, all the while using common sense and informed intuition.

*Research everything your doctor says and what your kid takes.

*Collaborate with your doctor and family members over treatment.

*Read your doctor's books on their bookshelf.

*Trust your intuition.

*Don't be afraid of herxes. Face them and manage them to the appropriate level. On a scale of 1-10, 10 being the worst, try to herx at a 4. 

*Don't waste your time therapy-bashing, talking semantics, and participating in negative social media.  

*Treat the Cause and Symptoms together.

*Don't invest time in giving a crap about what others think.

*Read and research every day.  Even if it's for a few minutes.

*Attend conferences and seminars.  The more you personally know, the more you can help.

*Be mindful of your baggage, fears, and worries when caregiving. 

*Consider medication and counseling for you, the caregiver.

*Use social media such as to help pay for treatment not covered by insurance.

*Recruit family and friends to help out.  Tell people specifically how they can help you (Most people don't really know since they haven't been in your shoes).  

Wednesday, November 2, 2016

Fall 2016 - Sophomore in High School

After years of tutor support and struggling academically including doing homework with blurry vision, profound fatigue, headaches and brain fog, today Romy is symptom-free and takes accelerated classes as a sophomore in high school.  She’s also on the Constitution Team that competes with other high schools across the country. Romy's discovered a passion for civil rights, especially those for women and minorities.  She is very interested in the election and what goes on culturally with world news and events. 

Romy makes her diet and a healthy life-style top priority.  She enjoys dance classes, kick boxing, rigorous workouts at the gym, and long walks on the weekend with her dog. She loves to cook with her dad and is a master at making green smoothies.  Her family grows vegetables and cooks almost every night.  

Romy has become wiser and more balanced as she has healed. As she puts it, "I'm becoming more of myself."  She loves being social, and has a lot of different friends across most groups. She loves discovering herself by playing around with fashion and enjoys creating different looks with cosmetics, although she prefers no makeup for school. 

She amazes me with her stamina - a couple nights a week she'll be at school for over 12 hours straight for meetings or sporting events. Some days she'll walk all over downtown shopping or eating out with friends. All from a girl that had to crawl up stairs and use time walking very sparingly.  

Beyond grateful.  Such a joy to see life unfold for her as it has.  

Wednesday, March 30, 2016

Spring Update

Here I am looking out my office window, enjoying the peace and solitude.  I'm a little sad about some things going on in the health world, but the status of my daughter is not one of them (more on that later).  She will be 15 in a month.  Healthy, living a normal life of a freshman in high school.  She's been in remission for over two years now, and no longer needs the monitoring of a Lyme doctor.  Our Story contains more details.

Romy has a stable group of friends, and new friends that have blossomed from her youth group and from classes.  She asked a boy to their winter formal sadie hawkins dance, and had a blast. This dance was on the last night of mid-terms.  Romy did great at managing the stress and extra study load and staying out late at the dance.  Amazing!  All from a girl that could barely make it through a school day, and if she did, needed to nap for a couple of hours after school.

She tried out and was selected to be on the Constitution Team for her high school.  We were elated and so happy for her! All from a girl that once had trouble reading and doing math problems because of Lyme.   Now those academic skills are a strength.

It seems as though we've made it through the hump of adjusting to high school and the growing pains mentioned before.  And I say "we" because man, I have been put through the ringer, big time.  Things have calmed down quite a bit, but the teen vs. mom stuff continues on.  Romy is separating like they do in after school specials.   The eye rolls, back-talk, and attitude.  The trying things on with me as practice.  Pressing boundaries.  Me more than her dad:) I know it's normal but....

Although it's very hard to be on the receiving end, I am so grateful we are here at this phase.  The big news is that she's CAPABLE of separating because she no longer needs her main caregiver (yours truly).  So many Lyme kiddos don't get that opportunity since they require too much care.  They don't get the opportunity to spread their wings just yet.  Makes me so sad, since adolescence is hard on anyone, let alone a child managing a chronic illness.  Since she was 7 years old, we weren't just mother and daughter...we were patient and nurse. Constant contact, something to do every hour for her illness.  The chords of burden, resentment, and the nightmare memories have all had to be found, processed, and cut.

 It's strange, almost eerie, that she and I went from communicating 8 times a day to execute her Lyme protocol to just once, mainly for vitamins and what she wants for lunch the next day.  Not to mention the early days of care that resembled an infant schedule.

Some days it feels like one big blur, like she was super sick just yesterday...when it was scary each day living in fight-or-flight mode.  Every morning I opened her room door to the unknown.  Each day presented a healing crisis to solve or something milder, perhaps an easy day, a day where a full school day was a possibility.

Allergy Season
Allergy season has hit big-time as evident by the beautiful blossoms exploding around me, and that heavier, dusty feeling in the air.  Life is in the works!

In this house, allergies used to be such a burden and focus.  I have never witnessed such a mild, gentle adjustment to the dramatic weather changes and pollen spikes.  It's pretty amazing.  To date, I've only needed to do two BioSet clearings for allergies this year.  Only once has Romy gotten randomly allergic to her lunch due to the sudden high toxic load of the season arriving.  One clearing for the hormone panel:)   Romy has been taking Claritin most days, which helps.  That's all she needed to get her through that initial onslaught.

Lyme Symptoms
Romy hasn't needed monitoring by an LLMD for over two years now.  No symptoms to report.  Just the sensitive nervous system that no longer affects daily life.  Once in a blue moon she'll get allergic to a food that she hasn't had in a while, but that's pretty much it.  She can even handle strong tv and news content (even Trump lol).

She currently needs vit D, CoQ10, and B12 since she is now a vegan.  Not every day, but throughout the week it will come up.  She is back to exercising and is loving her new exercise classes and working out with a trainer to build up her strength from her long time off from her knee injury.

Romy and I continue to select supplements and vitamins by intuitive testing and muscle testing. Each day I stand in front of my supplies, organized by purpose, and test if anything is needed.  The categories I commonly check are brain support, essential vitamins and minerals, trace minerals, probiotics, binders, homeopathic drainers, and any herbs for immune or microbe support.

It is still a little ptsd-ish for me to not have her on an herbal anti-microbial protocol or any brain support such as phos choline or phos serine after all these years, so the double check helps me.  She also doesn't need to take Rescue Remedy anymore. This was something she used to take a couple times a day for years to help calm the nervous system.  Her body also doesn't rely on probiotics.  My intuition tells me that we are finally in a place where her microbiomme is healthy and can manage on its own.  Amazing how the body can heal itself, given the right support and time.

I do energy balancings about once a week on her, but for the most part she treats herself as needed(with balancings and reiki). Her essential daily baths filled with epsom salts and occasionally minerals, essential oils, and bentonite clay are happening about twice a week, and rarely does she need anything in it.  Just the heat.  There is nothing better than learning tools for Self Care.

I am so grateful that I get to see her go about her day without limitations and to be pretty much worry free about her health or being vulnerable to something extraneous.  It is truly amazing to be in this place.

Sunday, November 29, 2015

Update - Fall 2015

With gratitude, I am able to share that my daughter's remission is holding.  She's 14, and a freshman in a public, city high school now, making A's and B's.  Overall her body and mind are more solid. She didn't have a flare up this year, even during an extremely stressful period.   She tore her knee meniscus, causing her to stop dancing in the middle of competition season.  This took a far more emotional toll on her - her identity, her outlet, her passion, team friends, all gone over night.  Even with that, she didn't relapse.

Residual symptoms continue to be the occasional food and pollen allergies a couple times a month.   The reactions and autonomic stress responses are milder and shorter in duration.  She's had some rough days of feeling anxious and panicky this fall due to some growing pains - a big high schooler, her knee setback, and what I see now as not Lyme (and confirmed by an LLMD), but growing pains and teenage issues.   

Interestingly, now that the Lyme layer has gotten to this stage, I can see more clearly some of her underlying metabolic vulnerabilities.  Her endocrine system is sensitive outside of the Lyme piece, just like we see in our family history, including the symptoms I had when menstruation hit me, ten years before I had Lyme.  More to come on this I am sure, but the lightbulbs are flashing big time! 

So with hormones and lack of exercise, it's amazing she hasn't fallen apart.  I know the heavy exercise had been a big part of her healing mentally and physically.  She should be cleared to begin PT during the holidays, so I imagine she will be back in the studio and much happier soon.  

The good news is she's flourishing, and discovering that she has more interests, gifts and talents as her knee heals.  She loves school, has a solid group of friends, and is involved in youth group.  I am so thankful for her ability to adapt and take this long dance break in stride.  

Monday, June 1, 2015

Thank You

Thankful for the Lyme communities and brave doctors and practitioners.

-My good friend Laura Sawyer helped me with editing and guidance from the perspective of a fellow Lymie.  I am deeply grateful for her friendship.

-Thankful for Pam Weintraub's book.  Where would we all be without this all spelled out for us?

-Karen Gaudian & Jennifer Reed help in talking me off the ledge, getting help, listening, and being earth angels at the beginning 7 years ago.

-Dr. Jones, Horowitz, and Marra for saving my daughter's life.

-Dr. Jennifer Means for being "on the ground" nearby in the early days, and being our general practitioner over the years.

-Friends and family that empathized and listened to my crazy talk about a crazy illness.

-My Lyme sister Rusty, whom shares the same life as a Lyme family.

-Last but not least, my husband who made it possible for me to be a full-time caregiver by working very hard every day and believing in my ability to make hard decisions every day.


Recording of daily symptoms and status is an effective way to inform, recall, and manage this illness. However, no one has the time to sort through a lot of information.  Keeping a document under one page long is your best chance of it being an effective tool.  Doctors, family members, babysitters, and teachers will most likely read and comprehend a snap shot.  This also forces you to really hone in on the highlights and most important information.  The better your one pagers are, the more likely it will help a practitioner in treating your child.  It will help provide perspective to people in your Lyme person's life.

Here is what you want to include

1) Overall paragraph summary of symptoms, anecdotes from school, activities, and anything noteworthy.  Overall percentage score, quantitative data if possible, such as number of flare days, missed school, other symptom events.

2) Current Protocol Organized by Purpose:  bug killers, probiotics, immune support, brain protocol, inflammation, enzymes, biofilm protocol, and others

3) Symptom List:  New, Ongoing, Occasional, Returning

4) same/better/worse notations when appropriate

Example of Symptom Summary 
General comments:  Romy has made steady progress in recovering from her relapse.  Although sx are mild, they are every day (eye blinking tic, emotions, and fatigue).  Sx worse b4 bed and upon waking.  Sensitive to food/abx/supps, and getting enough sleep.  

Since Our Last Visit:  Flew to east coast for Thanksgiving, got worse and worse collecting sx for the next few weeks. Really bad eye tics that lasted a couple weeks, affected her reading and kids noticed at school.  Got Bartonella Nodule, then too sick to go to school for the week before Christmas.  Occasional vision problems (blurry, blind spots).  

Flare reaction to food, biofilm enzymes, and occasionally her supps and abx.  A Bart caused flares too.  Desensitized her for abx, pasta sauce and milk with BioSET.  Working on the rest. Working on others (eggs, soy, and supps/abx).  Added in digestive enzymes which helps. 

Energy Testing:
12/21/10 Zyto: chlamydia trach, citrobacteri braakii, corynebacteria ukerane, clos bot a
1/3/11 BioSET: gall bladder, carotid, parotid, liver function, brain function

Example of Symptom Status
Common Flare Symptoms
emotional (anger, crying, sensitive, whiny)
throat, sometimes with stone sensation
slightly flushed, warm on occasion
Clammy hands  
vocal/throat tics:  throat clearing, sniffing, squeaky noises

New and Occasional Symptoms
left eye blinking tic, so bad it affected her reading.
weak arms
weak legs, especially going up stairs
right side of calf in front, and later all the way down leg to top of foot.   
Right plantar
right neck
right shoulder 
right arm pit
mid-back hurts
right patella burns when walking
chest “stings”
all-over “sore” legs
hot then cold in bed
crying in shower for no reason
sweaty neck
temporary nausea
itchy and sensitive neck
sensitive head
reddish cheeks, eczema on face, neck, upper arms. 
back of neck hurts
right eye and frontal/occip headache
one night of insomnia
rt hip flexor for an hour, aching on and off