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).  

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