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.
The following is an excerpt written by Dr. B. Robert Mozayeni in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.
When we talk about Borrelia, we must talk about other infections called co-infections. I don’t know if there really is anything “co” about these infections. I think they are called co-infections because as Lyme patients’ symptoms didn’t respond to treatment, people started looking at other infections.
So which germs really cause Lyme Disease?
Co-infections found in patients include Babesia, Ehrlichia, Anaplasma infection, Bartonella or other proteobacteria, or Mycoplasma.
One study done in New Jersey found by PCR, which is not as sensitive as enrichment culture followed by PCR, approximately a third of the ticks carry Borrelia, a third carry Bartonella, 2% carry Ehrlichia and 8% carry Babesia. The positive rate for Bartonella, could have been higher if the study had been done with enrichment culture followed by PCR – a method developed later.
Researchers started recognizing the gut of a tick is not a place where the tick only selectively carries Borrelia. Ticks, like other insects, can carry various microbes. However, it is not proven that these microbes are transmitted by ticks; and it is not proven that they are not transmitted by ticks.
It should not take a lot of research to determine this. If a tick is feeding off a variety of mammals why wouldn’t the gut of the tick have a whole bunch of different things in it? But it does create some interesting questions. For example, we have never really had a good Bartonella test until recently. How can we be really sure the ECM rash is only from Borrelia? What if the ECM rash is from both Borrelia and Bartonella? That is an interesting potential study.
Is there some combination of microbe inoculation that has to occur in order for someone to get sick from a germ?
Does it have to be Protozoa plus bacteria? Would the same person get as sick if they had only one of those? These are some of the questions related to these infections. The complexity goes up exponentially because now we have to go further than deciding if one of these infections can make someone sick without the others. We need to answer the question, “What happens if a person is dealing with combinations of these germs?” or “What sort of person (genomics, diet, etc.,) would get sick from a germ?”
This leads to a paradigm shift in how we are beginning to think about these germs. We need to start thinking about there being an entire set of genes being carried around by different kinds of microorganisms. We need to think about the whole ecosystem and potentially look at all of the genetic information determining bacterial, microbial and parasitic characteristics. We need to conduct a microbiome analysis of all the genetic material associated with illness and also consider the best response to the genetic code found in that microbiome.
The future of this science will be to look at someone’s blood, or even all the parts of their body, and understand the ecosystem of germs living there. Then you look at their genome. Then you rent some time on a supercomputer, assuming you know what to tell it to do, to figure out what sort of disease would result, and what the best treatment approach would be for an individual with that genome, this microbiome, this diet, these environmental factors, this sort of stress or this kind of pollution in their environment. When you can run a full simulation considering everything, then you know you might be able to get the answer to everything. That is the “pie in the sky.”
In the meanwhile, the more comprehensively we look at different germs the more we will learn. We also then need to look at the technology proves whether or not this germ causes that symptom.
My husband Jeff wrote an entire chapter in our book Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners. I have included his concluding paragraphs below.
It is work, hard, daily work, to support and love a spouse, partner or family member with Lyme and co-infections. But it is vital. Every patient needs and wants to be loved and believed.
They are not crazy, or “attention seekers.” They are not making this up. Each and every symptom is real. They are in pain. They are confused. They have very real problems making simple decisions; even the day-to-day decisions are difficult.
It is hard to describe the exhaustion because it is so bone and soul deep. The look in the eyes of the infected is deep-set and far away pain and angst ridden. The hurt is deep. Often, the only thing that helps is holding them and reassuring them they are loved and you will be there for them.
It is this depth of unconditional love we must wrap them with. Love and care is healing.
Patients with Lyme Disease or co-infections of Lyme Disease are NOT:
lazy, faking, sensationalizing, imagining things;
refusing to learn or grow, avoiding responsibility
going to grow out of it
contagious; it is safe to hug us
“just depressed”; if we are depressed, it is because of living with Lyme, not the other way around.
Patients with Lyme Disease or co-infections of Lyme Disease ARE:
actually, very ill
overwhelmed and frustrated their body cannot work the way they need it to
experiencing real pain, often excruciating
unique in that we each present with different symptoms; no two patients are the same
examples of what can happen to your friend, sister, cousin or boss who has been sick for a long time with no answers; we share our stories so others may find a shorter path to a correct diagnosis
Patients with Lyme Disease or co-infections of Lyme Disease DON’T want to hear:
You don’t look sick!
Are you ever going to heal from this? (Would you ask a cancer patient this question?)
But you seemed fine ten minutes ago.
But I thought you rested yesterday.
Oh good! Now you are better and you can go back to the way you used to live/work!
Maybe you should see a psychiatrist.
But you looked fine yesterday.
I already told you this.
Get a grip; there is nothing wrong with you.
So what, I get rashes all the time.
If this was real, the CDC would do something about it.
I know people who have real problems.
Are you sure you have a good doctor?
When you are going to finally be rid of this thing?
What time is dinner?
Are you sure you have Lyme Disease?
How can anyone have that many symptoms?
Do you really need to take all those pills?
Isn’t it time you get over this thing?
Patients with Lyme Disease or co-infections of Lyme Disease NEED:
validation they are truly ill and require treatment
help accomplishing the simplest of tasks
your love and your physical and emotional support
to feel wanted
others to know we are not weak
loved ones to make an effort to educate yourselves about our disease
room to tell our stories
friends and family to listen to those stories
to be reminded of things
funny cards, funny videos, or a nice note
a ride to the doctor
Is this Really a Deadly Disease?
In 2002, two years after receiving a tick bite, my Aunt Betty died from complications of Lyme Disease. I know others who have died and many more who have nearly died from complications from the disease and complications from their treatment protocols.
I also know too many Lyme patients who have taken their own lives as a result of losing all hope for any type of recovery or healing from Lyme Disease. Over the past six years, within Facebook support groups, we lose about one chronically ill patient a month to suicide. While we work hard at staying connected with one another, sending funny or inspirational cards to one another, staying up late with those in crisis, some patients choose to end their own suffering through suicide. This deadly aspect heightens our sense of time; time left in life, time lost to this disease.
This is not a disease to be taken lightly. It is not a disease to ignore. The patients are not faking it or lazy or trying to get out of anything. They are sick and need long term, serious, qualified medical help. They need the genuine love and tangible support of every person around them.
As the spouse, significant other, or any family member, you must be aligned with the patient and, most importantly, you must believe this family member is truly ill. That is the first step of support.
You cannot blame their symptoms on their lack of effort, or see them as someone who is complaining or who is griping.
Without medical knowledge and without the experience of dealing personally with the effects of this disease, you cannot proclaim that the only explanation is they are whining or not trying hard enough.
You must believe this family member is ill and support their fight.
Lyme Disease is called “The Great Masquerader,” as it mimics so many other diseases. It is not just a bull’s eye rash. In fact, up to 60 percent of Lyme patients never even see a rash. When meeting fellow “Lymies” I found there was not really one common denominator in what this disease looks like or how it presents.
Even within my own family, it manifested in three very different forms. My husband Jeff had what would come the closest to “looking like” Lyme Disease. He had a rash on his leg. For two years, he was told it was eczema. Two dermatologists and two internists prescribed various creams. When Dr. Mozayeni saw it, he declared it was certainly not a typical Borrelia or Bartonella rash, but it certainly was not eczema.
Our son Stephen developed what appeared as “stretch marks” on his trunk and arms. They looked like miniature fireworks with bright red marks at one end. Stephen also suffered from recurrent pneumonia, a low-grade fever, and he tested positive for mononucleosis twice.
The only skin rash I recall is six months before the accurate diagnosis. I developed a rash on my back. The dermatologist swore it was shingles, except it crossed my spinal column, which is impossible for shingles to do. She took five biopsies, including core samples. “Herpes,” she declared. “You need to inform your husband.”
Lyme manifests in many different forms. It usually appears as illnesses related to auto-immune disorders.
For 29 years, I watched physicians write “auto-immune?” on my chart, never knowing a series of auto-immune diseases could point in the direction of Lyme and its co-infections. I never thought viral meningitis, joint pain, recurrent sinus infections, Hashimoto Syndrome, and itchy ears could be related.
Sharon Rainey is co-author of Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners.