First Bite

Here is a picture of my daughter Liz and me the day our family went on a picnic to the Marin Headlands- area just over the Golden Gate Bridge in Marin County. It was such a beautiful day, and I couldn’t resist sitting the tall grasses picking the wildflowers with my daughter.

I found the tick embedded in her back on the car ride home that day- and yanked it out with my fingernails and threw it out the window! I thought about Lyme disease briefly, but the wisdom of the time was that CA does not have the deer tick and no Lyme there (so I thought…)

Within a few days, Liz had severe respiratory issues. She began wheezing at night, fevers that came and went, extreme sweating to name a few. I took her to her pediatric doctor and asked for a Lyme test and evaluation. All came back negative and they put her on a nebulizer for the wheezing and suggested seasonal allergies. After the bite, she became sensitive to all foods and plants.  The nebulizer -wheezing treatment was needed off and on for many years – with symptoms coming and going. And times monthly when she was doing well. These cyclical allergy type attacks became her new norm. 

Lyme Time  

Fast forward- We were transferred back to NJ after 5 years in CA.

Liz went from Elementary School through Middle School, still dealing with the same symptoms off and on. My son was healthy and they both were heavily invested in a multitude of sports after school. Soccer, basketball, gymnastics, swimming, tennis, baseball.  I became a mini-van sport mom and we did it all. There were times that Liz would complain about her knees and ankles hurting – and school stress would give her headaches and feverish/flu-like symptoms.  Again, none of our good physicians could find anything really wrong.  She was treated with allergy shots for sensitivities to all animals, some foods now and all outdoor plants.  Along with still needing the nebulizer from time to time.

The symptoms escalated and worsened during a week or so each month. A new neighbor was able to share her wisdom with me about the symptoms Liz was experiencing and recommended we have her tested for Lyme Disease. This young neighbor was near death with cardiac arrest and her cardiologist found Lyme as the cause. She was treated successfully and suggested a group of infectious disease doctors for testing.  The specialists did not find Lyme and we ended it there, but did not stop the search. I was reawakened on a mission to find the answer for her symptoms.

A mother will do anything for her child’s health.

In 1999, the internet was just starting to host chat rooms- a new thing- and I found Lyme Net. I needed to choose a “Tag Name” to register for the forum.  During this time, Liz asked to have her bedroom painted- and chose the color called Lime Parfait-the week prior to her diagnosis. Very crazy that she would pick the color lime.  I thought that would be a clever online persona – “ Lyme Parfait” or LP for short, like the layers of Lyme and co-infections.  I later learned that was a very wrong thought. More on that later.

Lyme Net was a fantastic support for me at the time where I learned the basics and the controversies of treatment.  Many friendships developed online and guided me toward treatment options. I took many suggestions to try wonderful supportive products that I still use today. A mother will do anything and try just about anything they believe in for their child’s health. I was also an eager victim of a few of the lyme ”scams” pushed by marketing stalkers taking advantage of this new disease of the decade.   It was a big lesson about trust and seeking truth and light while stumbling in darkness. Over time I have become a sleuth about knowing what works. And today have connected to the good tools and solutions.

Liz was tested by a LLMD (Lyme Literate MD) suggested by an online poster. Hard to find one during this time period, especially in the same state!  This NJ LLMD suggested a new testing company called Igenex that just opened that year, and the results came back positive for Rocky Mountain Spotted Fever, Ehrlichiosis, Bartonella, and Borrelia.  I was stunned that no other infectious disease doctor could find this, let alone most did not believe that she had Lyme at all. The typical scenario many still experience today. I was also tested due to some mild symptoms I have had for many years, and came back positive for Lyme, Mycoplasma and Ehrlichiosis.  We both started treatment together.

We stayed with this LLMD in NJ for 3 years and she kept her name “under cover” in a very remote and obscure office out of fear of attack by the medical community. I respect her greatly and give her much credit for my education and holding my hand and wiping my tears at a time where I was stepping out of the box with trusting odd treatments that were not recognized by leading medical science. There were times I thought to myself, “what in the world am I doing to myself and my daughter?”

Is this treatment really helping? 

I will not go through the full litany of treatments that ending up lasting 3 years and more.  From the first day, what made us feel so much better was the initial IV antibiotic treatments, B12 weekly shots, and then being put on daily doxycycline for a few months with cholestyramine for a binder.  I can now describe the treatment as a full cyclical anti-microbe treatment. We were both on a Lyme, heavy metal, fungal, parasitic, anti-viral and bacterial treatment plan.  We also had “leaky gut syndrome” a new term for us and went on the gluten free, dairy free, sugar free diet. Now all of the above is accepted and known as treatment within the Lyme community. But at that time, I tried to educate and convince my husband who was heathy that we needed to change our family’s diet and pay all this money out of pocket for unique treatments. It just did not seem right to him. Felt like a big scam to him. A new way for doctors to make money with loads of supplements sold in the office and no insurance to cover these treatments.   I understood his thoughts, but I knew it was working and I knew how I felt on the treatments. My husband who I respect and know loves us was having a difficult time understanding, but did support what I felt was right.

The stress on me- knowing it was working and wanting to help Liz but wanting to honor my husband and not stress us out financially was overwhelming me internally.  I did not want him to think I’ve gone off the deep end with all the experimental “natural” type healing modalities I was trying. I had to trust my intuition and I was looking for divine guidance.

Obsessed with Natural Health

I became obsessed with learning online and getting through the full treatments.  My friends and family were tired of me telling them the new health tips I learned, thinking I was enlightening them and helping them when they shared some health concerns. I just wanted to help.  It was too much information for those who really did not want to know. I knew too much.  I learned the hard way that when people are only sharing their life, it is not appropriate to always have the answer for them. But if they ask for my thoughts, then I was to give suggestions and they were grateful.  I now understand well what the patients who call me for advice and support are going through. I was there too.  I have many contacting me for their grandchild or their extended family member and want advice to give them. Now I advise them to have the ill person or the mother of the grandchild call me if they are searching. Gently guiding the caller to a better way of support of the ones they love. Relationships are important to keep healthy.

Family rarely listens to our suggestions when they are given without request, they just want to have a listening ear. I suggest we just listen, and only offer advice when asked.  I find when my family and friends are seeking health and know I have experience, they will ask me if they really want advice. 

Becoming a Health Advocate

At the same time period through my kids middle and high school years, I became the health advocate for my aging in-laws- my father in law with dementia and mother in law with beginning to late stage Alzheimer’s.  I was also very involved as an advocate for our aunt who was single and lived close by and diagnosed with Cancer, and my younger sister with Autism and mental health issues, that developed pancreatic cancer.  I was deeply entrenched in their care with other family members including daily home visits, doctor appointments for them and the years of special care involved. From them living independently, to hiring and managing part time help for them, to full-time, live-in help to eventually moving to nursing homes and their eventual death. The stages of care were emotional for our whole family. Many different opinions and emotions became raw between family members. But the outcome later was beautiful, as we learned to respect and value each other’s opinions and learned to work together to help those we each loved.  It took much patience and wisdom to work through this.

Besides the Lyme World, I took a deep dive into the Cancer, Alzheimer’s and Autism world and became a respected patient advocate with the physicians I was taking my in-laws to see at Columbia University’s Alzheimer’s research group.  I shared the natural diets I had them on, and the positive results for the study they were participating in, taking them off sugar, and white foods.  Several of the physicians asked me to support some of their other patients’ caregivers, by sharing what is working for my family. I was glad to assist anyone who called for support.  I was also involved with a few foundations in NYC and NJ related to these illnesses.  My world opened up with curiosity for the solutions for these chronic conditions and compassion for the families I began to coach.

Swimming Rules: Swim-School-Eat-Repeat

Looking back, I must say, it was very poor judgement on my part to keep up the crazy schedule I had for our family. I was caught up in the school, sports, grades, college bound activities for the kids with an over the top schedule. The daily schedule was color coded on a big monthly desk top calendar so I would not forget a thing. Each day was unique.  Fitting in the extended family support visits in between all the driving each day. 

Both kids went to two different middle schools and high schools and they each began swimming before and after school in a very competitive USA Swimming program. They had different practice times for a few years and carpool scheduling was also happening with ride shares, etc. I thought swimming would not be so hard on her body compared to the other sports they enjoyed and a nice way to stay healthy and in shape.  Little did I know that swimming at the level Liz competed was a 2 day practice and sometimes 3 a day if you add the high school team practice and dry land weight lifting.  I learned that swimming takes more energy and stamina than most other sports she was in. There were days she could not walk or breath well, and she still had to make practice to stay on the USA Club team.  Swimming rules the life of club swim families.  There are only a few weeks a year of no swimming, the beginning of August. 

Why did I keep this crazy schedule.? I humbly say that I just knew Liz was a natural athlete. My son was also good, but Liz had the unique athletic drive and skill that is a gift.  From her very young years to now, Liz has that amazing ability to excel athletically and competitively in anything she puts her mind to. 

I will not brag about all her accomplishments in multi sports over the years, but with swimming her coach told me she was swimming at Olympic caliber at age 12, and encouraged her to move into the highest level training group with the older high school kids.  Liz began swimming at National meets with Olympic greats such as Michael Phelps and Katie Hoff.  At the time she held USA National records, and when entering high school, her team won state championships and she still holds NJ state swim records and pool records at multiple facilities. No one was told that Liz was dealing with Lyme, including her coaches. We kept this quiet. She did not want this exposed. Lyme was not a very known disease for kids her age, and it would have precluded her from staying on that team.

 Liz was in full blown lyme at the time of this picture and meet. We headed to her LLMD weekly visit right after this was taken.  It makes me sad to look closely at the picture as I see the circles under her eyes – the look of lyme.

How could I stop her chances for college recruiting for a girl with a potential of Olympic competition – hers or moms?  Well she had the package- but the Lyme was not always cooperating. Lyme needed to be in control, and it was.

With swimming it was good and bad, there were physical ups and downs that were cyclical with lyme. At the Colorado Olympic Training Center Liz had a hard time with altitude training and lung issues. The altitude was not a good thing with Lyme to adapt to the altitude training.  Most others swim better with this training, it was opposite for her. It made me curious.

I learned much from watching her body perform in cycles- which helped me know what it needed when.

She was a sprinter- and exploded off the blocks and kept a strong pace swimming butterfly and freestyle events.  I knew when she was on and when she was off by watching her swim over the years.  I became an expert on Lyme treatment for an athlete and figured out a formula of nutrition and supplements that worked well for her to maintain her health and athletic stamina. What to do when Lyme was active and what to do the other weeks.  Other parents saw a transformation in both of my kid’s swim times and endurance and asked me to assist them with correct nutrition for their children. My son was a distance swimmer and he began swimming negative splits – which means swimming faster the longer he swam the mile. I handed out my recipes and started a pre and post swim smoothie craze at the club. Not one swimmer, parent or coach knew she had Lyme and I have heard many thought I was too obsessed with my children’s nutrition. 

Liz was on probably 20 different supplements 3 x day on and off, and doing this while eating correctly became work for us all to keep on top of it.  I was making smoothies after school for both of my kids and I don’t know how I did it all.  Life for them was wake, swim, school, swim, eat homework, repeat. With weekly or bi-weekly after swim practice hour rides to the LLMD for our weekly IV or B12 Shots. My husband Brendan was traveling during the week those years and I was pretty much doing the weekday activities by myself. I was in the groove and just kept the schedule and taking care of things as they happened.

During this same time frame, I was also supporting our extended family mentioned previously- fitting in their doctor visits driving hours for emergency issues and care for my sister who would have regular emotional breakdowns and suicidal attempts – these were a daily part of my life. 

Muscle Testing and Natural Treatments

Come Junior year of High school, this is the college recruiting season and the swim times matter.

One meet Liz needed to attend to qualify for Olympic Trials was during her high school spring break in Indianapolis. We both needed the spring break, but she also needed to attend this USA National Meet. I promised her we would do a mother daughter trip- somewhere in the sun to get some vitamin D immediately after this meet for a few days break.  Although her symptoms have been very stable for the last few months, her LLMD felt she should go on a Port as the next step. We had both been on Doxycycline and I felt the symptoms were very manageable. Her LLMD did not want us off anything and said going in the sun would be a mistake.

A port would have taken her swimming and college recruiting career away for good. No one can swim with a port!   The LLMD gave me a hard mother word…asking me “ Is swimming more important than your daughters health?”  I told her I would think about it and connect after our break.

I was stressed with the thought of putting an IV port in my daughter. I could not imagine it.

So, I went on Lymenet.

My online friend Gigi was always giving me solid advice I resonated with concerning natural health and common sense.  I asked Gigi how long would it take to get Doxy out of our system so we could lay in the sun.  She told me to get off for a week before we went and we should be fine.  She was giving me the advice she learned from her good friend Dr Klinghardt – a German doctor I had never heard of. Her medical wisdom and advice were always something she seemed to learn from this German doctor that always resonated with me. Many people followed her on Lymenet but others complained and tried to get her kicked out related to her recommendation of natural protocols.

When I told my LLMD we were going to go off the doxy for a few weeks- she highly discouraged it and said we would both have a big relapse and would be hard to get on track again without a port.

I went with my gut intuition and we went off the doxy, went to the meet, then went to Hawaii for 4 days and sat in the sun, learned to surf, and had a wonderful time with Liz.  No reactions to the sun and no setbacks.  Liz swam well too and just missed her Olympic trials qualifying time- but we didn’t care. We were free of supplements and were just living natural in the sunshine. It felt great.

Decisions and Time for Change – Lymeing Out

Once home, the decision was on me. Do we start back on the antibiotics? Do we get a port? Will a relapse happen?

Gigi, once again came to my rescue with advice that she learned from this natural German doctor.

She said “LP, as she called me, “You and your daughter will not ever get free from Lyme if you as the mother keep attaching yourself to the disease of Lyme. “

 I did not understand immediately. She said that the German Doctor has taught her that attachment to disease by word, name and association sets the disease in. It welcomes it as a guest.  Also when the mother gets free emotionally, the child gets free.  What I needed to do was to change my identity on the forum. She asked me to notice that she only called me LP. Not Lyme parfait. She would not write it.

A new thought for me, but I knew deep inside it was correct.

I learned if I identify myself with Lyme, then it rules me. If I say the phrase “my Lyme” then I have kept it as mine. I have set Lyme into action and given it a lifetime home in my body versus just a pesk to get rid of.  Treatments don’t seem to work when we identify our life with lyme and stay in the circle of this disease.  This thought she shared with me was what I needed to hear at just the right time. A timely intervention. A divine appointment again guiding me to take the right action and kick that unwelcomed guest out of my house.  I was giving it too much space.

I contacted the forum manager at Lyme Net and asked to please change my tag name. They had never been asked to do this but did finally accommodate me – I did not want to lose my connection to my online lifeline so I kept the acronym LP and changed my profile identity to Light Parfait. It felt right.

Divine Appointment

Gigi was excited for me when she saw my name change. Especially because I chose the word Light.

She explained how the German doctor works with layers of light – energy medicine and photons.  Light and water is the source of life. She said it is not a coincidence that I am following the light.

She said I was quickly moving through the 5 levels of healing by osmosis that she learned from her German doctor friend.

The most important thing is that the spiritual component to healing is the root of health and life. I was listening.  A house without a solid foundation cannot stand firm when the storms come or the virus sneaks in the door undermining the foundation. A balanced body starts with a solid foundation and connection to God is key.  She said to really be free is to have a deep connection to the creator of the universe, God. The physical body builds on this and stays healthy with this light foundation. God is light, and the only true healing source.  When light leaves our physical body-it dies,  but the spirit light body we have continues on. We need to feed and nourish our spirit body. The diseases like lyme take our attention from the spiritual so we end up focusing mostly on the physical. Healing happens with work on the full body which is the Spirit, Soul, Emotion, Mind then Physical Body- in that order, All together.

Well I knew this, but I now see how I compartmentalized my spiritual beliefs in God and my health and physical body away from each other. I am a Christian and have always believed in prayer and a regular attendee at my church and did pray for health regularly at church, but did not really put the whole package together thinking that I actually would be healed with prayer.  I was too busy.  It happens for others I know, but I was not deeply expecting it. I was on a mission to do it myself all this time.   I believe but forgive my unbelief.  Gigi had me thinking that day.

The Invitation

That same evening my husband took me to a small café for a quick dinner to just spend time together.  At the table next to us, a woman dropped her napkin at the same time I dropped mine, and comically we hit heads trying to pick up the napkins. She immediately said, “So sorry, it’s my Lyme disease” And I could not believe she said those words. I quickly responded –“ Don’t say “ My Lyme” it sets it in”.

 She said, “You are right. I should not even say it at all because my Lyme is totally gone. I am healed of Lyme.” 

 I said quickly,” Lyme never leaves, but goes into remission”

 She quickly replied, “You are right, but I am too.  You may think I’m crazy, but the Lyme actually went away when I went to a healing service last year, and it has not returned”

I replied “I don’t think you are crazy. I believe you and know I was to meet you and listen to you tonight. You are to remind me about how God works.”  This was my invitation.

This was one of the many amazing divine appointments I have come to recognize on my path to healing.  The woman invited me to the same yearly healing service that coincidentally was happening the next week. I had to be there and took Liz and my family. I notice divine appointments daily now. This invitation was life changing.

Detox-The next Step

My next step was to clean up the body and detox the effects of 3 years of antibiotic treatment. Gigi encouraged me to find a practitioner of muscle testing who could guide us with the individual natural protocol to clear off the debris.  I found a wonderful practitioner in NJ who also had studied with the same German doctor that Gigi knew. This was another divine appointment.

This practitioner was able to guide me with detox treatments for Liz and I to follow which took off many layers of debris and kept us very healthy and feeling great.  She was also able to fine tune a nutritional protocol just for each of us individually. We started incorporating homeopathic remedies for allergies and clear the candida build up from the years of antibiotics, with probiotics to heal the gut/brain connection.

I purchased a Sunlighten 2 person Sauna and we did many home detox protocols and the heat was a welcomed treat. Here is Liz stretching out in my sauna after practice.

I also started using this wisdom for my family members who I was caring for with Alzheimer’s/dementia and mental disorders and having some success with the nutritional component while I was in control of their diet, before they were moved to a full time care facility.

I was learning so much.

I was able to guide this practitioner with my knowledge of Lyme Disease and became her patient advocate and assisted doing the muscle testing. She had many of the Sept. 11^th world trade center survivors come for assessment and treatment that had multiple issues related to toxicity and cancer from the event.  I also learned the important emotional work of clearing the blocks to healing with her.

You can’t prepare for this. Or what was I preparing for?  Empty Nest

Then within a few months- everything changed in my daily schedule and life.

My son had already been recruited as a swimmer to college for a year and Liz was on her way to Swim for Boston University in the Fall- Lyme Free.

My in-laws were moved to a full-time care facility and I was no longer needed on a regular basis to be available for their care.  Everyone was moving on and I was done with the main healthcare of the family.  I found myself without commitments for the future. Empty nest was here.

My husband commented the night before I was driving Liz to Boston for college “So what are you going to do now that you will have an empty next, you may want to get a job to keep busy”.

An Unlikely Partnership

While on our way to Boston University, Liz picked up my phone as it rang. She said a man with an accent wanted to talk with me.   She handed me the phone and the man introduced himself as Dr Dietrich Klinghardt. He said, “ Debbie, you may not know me, but my name is Dietrich Klinghardt. I am calling you from WA, and I am inviting you to work with me running my medical teaching events and build a Medical Academy where I can lecture and invite others to teach.”

Was this a joke?  Wondering which of my funny friends who knows I have had an interest in a German lyme Doctor was pulling a trick on me?  He said, “this it is not joke, its really me.”  He was on a break from a retreat lecture on Whidbey Island and said 5 doctors at that retreat gave him my name as recommending me for this position. When he named them, I was in shock. They were the ones who knew me from my NY, NJ health advocate connections. He said” I am the one” who is to do this. Many have applied for the position. They are not right. I replied that he must be mistaken, I do not have the medical credentials for this.” He just laughed and said,

“ You don’t know me…I am intuitive and I know you are spiritual and you have the background, and a  heart for patients.  You are well respected by the ones who referred you.”  The spiritual aspect of the invitation was the only thing that made me consider this unique offer, and the fact my husband put out the thought of working just the night before. He said that was the right answer for him. Another divine appointment and an invitation that I had to check out.  This picture was our first meeting in NJ when he flew into meet me and the beginning of an amazing 10 year adventure.

 I finally met Gigi in another divine appointment.  She happened to be attending an event I was running where Dr Klinghardt was speaking in Seattle. He called me over and introduced her to me as his mothers’ German Friend, giving her credit for the many things she has taught him.  At that moment we were able to make our amazing divine connection of how she guided and taught me as LP, preparing me for the work I was to do and light the path ahead. With Gratitude to Gigi.

There is much more to share – there are many more chapters and characters.

Living Beyond Lyme

10 years later:  Liz now lives in San Diego CA working as a writer and yoga instructor and has a website where she encourages young Lyme patients on the healing journey with tips.

Last year Liz met me in Italy – before the lock down – and we had a chance to celebrate our health with gratitude over an Aperol spritz cocktail – a far cry from herbal Lyme cocktails.

I had a surprise zoom visit last weekend on Mother’s Day from my kids.

They both honored me verbally recalling all the driving and sacrifice I did for them and the extended family, Also the fun we shared together.  Liz especially brought tears to my eyes when she said after all those years of Lyme treatments, emotional meltdowns and expensive supplements getting ruined in the bottom of her wet swim bag- she has now come full circle herself. She attributes her health today to the foundation and habits learned from me during those years. She remembers what being ill feels like and she knows what health now feels like and is still living a health-conscious life. Both kids still love their green Vitamix smoothies.  This gives me joy.

A few take – away points:

1. No living in fear of Health Diagnosis
2. Educate yourself, but follow your inner guide-develop your innate intuition.
3. Love yourself as you are- things happen to get our attention.
4. Look for divine appointments to teach and guide your steps.
5. Not “my lyme” anymore- kick Lyme bugs out of your house and mind and vocabulary. You are more than a bug.
   
6. Pain and symptoms are your body talking- many times asking to release unresolved emotions or trauma. Forgiveness and Gratitude is a free treatment.
7. Use self-help home approaches to clear the debris in our body, mind and spirit
8. Learn the Herbal Lyme Anti-microbial Retroviral Treatment to use when needed for support.
9. Be conscious of what you put in and on your body. Choose wisely.
10. Our life experiences are the learning grounds for our next way to serve the world.
11. Offer health advice when asked- People don’t like health “ know it alls”
12. Suffering is a gift. Adversity Builds the Life Skills we need. We are the sum of our life’s experiences. It is up to us to turn things around and make all the adversity into a positive.
13. Start to Notice your daily divine appointments – we all have them.
14. Be open to the road less traveled- you may be asked to do something you would never believe possible.