I mourn for a father lost, and i celebrate my husband who gave me a son.
I didn’t want children when Jeff Rainey and I married. I woke up one morning, turned over and said, “Honey, I want to have a baby.” He replied without missing a beat, “It’s a good thing I’m flexible.”
My teacher today reassured me that though I miss Dad greatly, he fulfilled all of his obligations here and did all God needed him to do. His life was complete. I trust in that knowledge. But it still makes me wistful. And it does not take away Mom’s pain which remains fresh and unsettled.
My teacher and I talked about the trip to Turks and Caicos – you remember, the #vacationofalifetime. She said, “Every time you think of that trip, you think of it as magical . . . ”
I nodded my head. We all do. We all believe it was a magical trip.
She shook her head no. “That, my dear, was Love. It was Love felt by every single one of you at one point or another during those seven days. For once, for just a little bit, you felt as though you belonged in that family in all ways. It wasn’t magic, Sharon. It was LOVE.”
A friend of mine is in Turks and Caicos right now with his own family. The first night, he sent me photos of the sunset and texted, “It’s your dad saying hi from T & C.” It made me cry, in a good way.
I suppose what I am trying to say in a convoluted way is that while these holidays are difficult for those of us who cannot be with our loved ones, to remember they truly are with us.
I know when i look at the empty chair, or when we holds hands to say grace, instead of looking for Dad, or Jim (Jeff’s dad), or Aunt Betty, or Troup, or Aunt Cherry, I simply need to close my eyes, take in a breath, and feel them.
I might feel a light brush on the cheek, or the sun shining a bit brighter, or a whisper of the wind. They are with us, always. All we need to do is call for them in our hearts or out loud and they come to us.
Spirit has reminded me often this week that when I need help, if I reach out and ask for help, my guides and my God will be there.
So I ask for solace and peace in missing two of the greatest fathers God created.
I ask for laughter for my husband.
I ask that we gather on Sunday to celebrate family.
And even more so, that we celebrate and live in LOVE.
No more worries about having to carry that heavy paperback book around with you! We have the Kindle version of Lyme Savvy now available! Just go to Amazon and it’s there!
If you already bought the paperback version on Amazon, the Kindle version is just $2.99! How’s THAT for a deal?!
I hope by now you have learned a few things about Lyme disease that you didn’t know thirty days ago. I hope you carry this information forward in case you find yourself infected or you hear from a friend who has a myriad of mysterious symptoms who can’t seem to get an accurate diagnosis.
I am happy to speak with anyone regarding this disease. Please feel free to email me at Sharon@sharonrainey.com.
Please consider purchasing our book, Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.
From Galaxy Diagnostics
John (age 53) – Multiple Sclerosis
As a small animal veterinarian, John had daily contact with animals for more than 30 years. Starting in late 2004, he suffered numerous progressive neurological symptoms, debilitating enough that after being a runner for years, he faced the possibility of being wheelchair bound. His hands became numb, and he was constantly fighting fatigue. The buildup of symptoms over months prevented him from maintaining his practice and had him seeking medical help.
John consulted with numerous physicians and was ultimately diagnosed with Multiple (MS), for which there is no identified cause or cure. Physicians began to administer interferon treatment. The treatment may have helped, but John was still concerned. He knew, as a veterinarian, he had been exposed to numerous pathogens, and the MS diagnosis did not explain all of his symptoms.
John tested positive for Bartonella henselae. John was placed on a multi-drug oral antibiotic regime that lasted over a year. Progress was not immediate, but over the course of months, John regained significant use of his legs, had dramatically increased energy and saw a reduction of the neurological symptoms.
John’s quality of life improved to the point he was able to increase his work hours.
It has been an uncomfortable month for me. I have spent each day trying to educate everyone around me about Lyme disease, about Bartonella, about chronic infections. I have tried to educate and let people know about the devastation of this set of deadly diseases.
I look through pictures and realize who is gone, who died, who is too weak to participate, who has given up.
My aunt Betty died in 2002 from a pulmonary embolism – she was too weak from the Lyme disease to walk, so she was wheelchair bound. She died instantly.
Two years ago, while attending a Lyme rally in Arlington, I had a pulmonary embolism and didn’t know it. It was another week before I finally saw a vascular surgeon who sent me to the Emergency Room immediately. By then, the DVT (deep vein thrombosis) was from my ankle all the way up to my groin into my femoral vein. My shortness of breath that I had for two weeks was pulmonary emboli that just hadn’t killed me like they did Aunt Betty.
A few months ago, I had the same shortness of breath and bloodwork revealed I had survived another DVT.
Maybe I’m having a bit of survivor’s guilt. I don’t know why so many incredible loving souls have died and I remain here. I hold onto the thought that God says my work here is not complete yet, so He keeps me around to finish my job.
My job isn’t just to educate you about Lyme.
My job here is to love each soul as God loves us. We are all part of one great energy source that IS L O V E.
I didn’t learn this until my father’s death on March 25, 2016. It took 26 days and nights of miraculous, amazing conversations, and immeasurable love with my Dad to get me to realize some of God’s gifts to my soul, to my relationships.
I am grateful to have this opportunity to tell you my experience, strength, and hope in conquering Lyme disease.
But I am even more grateful for the love shared among those I have opened up to in these past seven years.
Lyme led me to Love. It might not make sense to you now. or ever. But to some of you, it does make sense. And I thank you for being a part of my life, a part of my soul, and a part of this energy source.
The following is an excerpt written by Dr. B. Robert Mozayeni in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners
Can Bartonella be One of the Biggest Global HEALTH Problems?
Typically, the medical profession has believed that in human mammals Bartonella is only an issue in the immunosuppressed. In our published case series of 296 patients we found evidence of Bartonella in about 62 percent of patients who thought they had chronic Lyme Disease.
All mammals can carry Bartonella. It has even been found in whales. Although Bartonella has been found in all mammals, all of the attention has been directed to rats, bats and cats.
Many veterinarians and physicians believe Bartonella is a significant global public health microbe. Dr. Edward Breitschwerdt believes that Bartonella is a big global health problem and at this point in time, it is not fully recognized as such.
Bartonella could turn out to be an important co-factor in some forms of immune suppression, including HIV and Malaria. Some very recent strains of Bartonella have been found in AIDS patients. Dr. Barbara Koehler at UCSF discovered a strain of Bartonella that was named after her, Bartonella koehlerae, in an AIDS patient. Our group published the first eight cases of Bartonella in immuno-competent patients.
There are a lot of people with Bartonella out there who think they have Lyme Disease, so the term Lyme Disease has become way too broad. It has become the term that the popular, in the vernacular, describes everything that is not understood – it is what I call #Lyme Disease.
Because that thinking – that logic – lives on the Internet, the definition of Lyme Disease keeps expanding. On the other hand, scientists try to keep their definitions pretty tight so they can have logical discussions and move the science forward. So they come up with a concept, narrowly define it and give it a name so that they can talk about it and then move it forward.
With the rise of the self-taught citizen scientists and the availability of information on the Internet, there is no logical process to guide a scientific discourse leading to an improved understanding of the problem.
Instead what you get on the Internet and in popular discussion is a maelstrom of confusion and anxiety mixed with an occasional nugget of incredibly valuable information if you can recognize it as you wade through all the blogs of suffering, confused, anxious patients.
From Galaxy Diagnostics:
Lauren (age 34) – Postural Orthostatic Tachycardia Syndrome (POTS)
Lauren was working as an emergency veterinarian in Washington, DC. In 2004, she received a cat bite during an examination. Within a single day, the bite became infected. Lauren was hospitalized and given IV antibiotics. While in the emergency room, she began to feel dizziness and developed blurred vision. Lauren assumed it was from exhaustion but was still feeling symptoms after three or four days.
Lauren was placed on oral antibiotics and returned to work. During the next few weeks, her symptoms worsened. Her vertigo increased and she grew increasingly tired and weak. She was unable to stand for long periods of time and had to stop performing surgery because her vision was too poor. Her increasing dizziness reached the point that she could no longer drive to work. She also started having trouble focusing and had problems with her short-term memory. Within three months, Laura had to stop working completely.
Lauren saw more than 20 physicians including the Mayo Clinic in 2006 where she was diagnosed with fibromyalgia and dysautonomia, specifically POTS (Postural Orthostatic tachycardia Syndrome). POTS is a chronic illness that is characterized by the body’s inability to make the necessary adjustments to counteract gravity when standing up. Patients experience tachycardia (rapid heartbeat), constant headaches, dizziness, weakness and extreme fatigue.
Essentially, this meant that a single movement like standing up could cause her heart to beat so fast she could pass out. Drug treatments were helping, but Lauren was still very disabled. From 2006-2009, she was essentially wheelchair bound and could not leave her house.
In 2009, after three years of POTS treatment and six years of being disabled, Lauren went on antibiotic treatment for over a year and saw slow improvement in her symptoms.
Lauren is now able to drive and go out of the house without assistance. Her energy level is higher and she has regained some independence. She still suffers from blurred vision, some aches and pains, but she is hugely improved today compared to the same point a year ago. She remains optimistic she will be able to resume a normal life. She recently gave birth to her first child and is doing well.
The following is an excerpt written by Dr. B. Robert Mozayeni in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.
There are greater risks for Bartonella as a co-infection of Borrelia because you can contract Bartonella also from flea-bites and cats. Fleas and several other vectors are the risk factors for Bartonella transmission
Bartonella has been shown to be present in:
allergen extracts that are used to treat dust allergies by injection,
bed bugs, and most importantly,
the common house cat.
Especially if the cat is an indoor/outdoor house cat, it is very likely to be carrying Bartonella.
The microbe gets into its saliva, the saliva gets onto its fur, its dander and the dander gets into the air. However, currently, there is no evidence to support Bartonella transmission by cats unless the cats are concurrently infested with fleas.
When Bartonella bacteremic cats are co-housed with non-bacteremic cats transmission cat to cat does not occur in the absence of fleas. This may or may not be true for dogs – we have no data speaking to this.
Current evidence from cats is that the saliva and nails become contaminated with infectious flea feces when the cat has fleas.
While no studies have been done that measure the risks, basic facts suggest a cat owner should be very careful to limit how much time the cat is allowed outdoors in order to reduce its risk for flea and tick exposure. Further, a cat or dog owner should be vigilant about controlling fleas.
Fleas, including sand fleas, present a high risk for Bartonella infection.
We try to blame the flea and the bug rather than the pet.
Veterinary medicine has worked to develop some excellent products to prevent flea and tick infestations in cats and dogs, which should prevent bartonellosis in family members. The products should be used year round for the life of the pet.
Up to 80% of feral cats may have Bartonella. It may be higher. I have found in patients with Lyme Disease a far greater exposure to cats than to deer ticks. Most cats are completely asymptomatic even when infected but keep in mind it is when the cat has fleas, that its fleas, scratch or bite is likely to Cat-scratch disease and that the cause of Cat-scratch disease, Bartonella, is very likely to go systemic after the rash has resolved. This has caused the medical profession to assume that Cat-scratch disease is benign and self-limiting – just because the rash resolves on its own.
No one realizes the rash is only the first phase of Bartonella infection and that the commonly involved lymph node swelling is clear evidence of the systemic spread. Once in the lymph nodes, the Bartonella causes a form of immune suppression and tolerance thus allowing the disease to appear to resolve when really it is going into remission preparing to cause a chronic smoldering inflammatory process throughout the body.
I think the attention given to Borrelia and its connection to the deer tick has gotten far more attention than what is another, possibly higher risk of exposure to fleas and the risk of Bartonella infection.
In the groups of patients we have studied, exposure to a cat, or to a cat plus fleas, is a more likely scenario given the prevalence of cats in human households.
Bartonella is a very common co-infection of Lyme Disease.
Bartonella is not just a co-infection of Borrelia.
Bartonella can be a chronic infection often unrelated to Lyme Disease.
Bartonella is also a chronic infection often misdiagnosed as Lyme Disease.
Bartonella infection might be a more significant global public health problem than Lyme Disease.
The following is a case study from Galaxy Diagnostics:
Hans (age 20) – Hypotension
Hans, a college student in Minnesota, was an active child growing up. He enjoyed hiking, biking, skiing and had pet dogs. He enjoyed a lively social life and was an honor-roll student. In April 2006, the year before high school, Hans began displaying what appeared to be allergies when he broke out in hives and had itchy eyes. However, an allergist was not able to explain the origin of the problem.
These symptoms quickly progressed with the development of insomnia and headaches, followed by light sensitivity and short-term memory loss. His parents were very concerned and consulted numerous physicians, including a neurologist, ophthalmologist, and infectious disease doctor. None of these physicians was able to offer a specific diagnosis, instead only treating symptoms.
After two years, Hans’ condition worsened. His energy level was so low he was unable to attend high school instead relied on private tutors and home schooling. Because he was unable to take part in the things he had enjoyed growing up, Hans began to develop anxiety and signs of depression.
Hans had been tested for seemingly everything. He was diagnosed with hypotension and put on medication for his blood pressure, but the only treatment offering significant relief for his symptoms was acupuncture.
Hans found his way to Dr. Mozayeni and started on a long-term antibiotic regimen. At age 20, Hans now enjoys the highest quality of life he has experienced since middle school. He is able to drive and attends college classes. He is able to catch up on the social life he missed out on as a teenager. His energy level, insomnia, headaches, and light sensitivity can still be problematic, but as he continues treatment, he has great optimism.
Advise family that time for relationships has to occur when you can, not on the traditional schedules.
Delegate. You have no choice.
If you can’t delegate, learn to let it go.
Tell friends you want to be included. One friend sends me photos of events her family has. Not on Facebook; to ME. It sends my heart soaring.
Bring the party to the ill person. Bring a sandwich, soup, and iced tea. And a cupcake with a smiley. And a small terrarium or something requiring little care (our memories fail us).
Send cards for no particular reason. It’s nice to send them and to receive them.
Don’t tell me to exercise. I am an adult, highly intelligent, and I am ill. My body tells me what I can handle.
Understand and accept my appearance may change. Makeup, hair care, dressing up no longer apply – I can only do what is easiest for myself based on my income, inability to sit for hours, inability to shop.
Offer to do my laundry once a month, help me sort my pills, put bills in a dedicated spot, set up my calendar.
Help with pets; buy a bag of pet food, walk the dog. Lyme patients love and depend on their pets for support.
If I refuse an offer of help, it may be because you offered something I cannot use.