Archive for the ‘Bartonella’ Category

Adjunct Therapies That Have Helped With My Tick-Borne Illneses

https://www.globallymealliance.org/blog/adjunct-therapies-that-have-helped-with-my-tick-borne-illnesses

Jen Crystal discusses the adjunct therapies that helped her in her Lyme disease journey.

Patients write to me every day asking what helped me achieve remission from tick-borne illness. I wish there was a magic answer I could give them, but since every single case is different, there is no set protocol. What worked for me might not work for someone else. Moreover, what worked for me five years ago is not what works for me now. Each case changes over time as spirochetes are killed off and symptoms improve. My Lyme Literate Medical Doctor (LLMD) is always fine-tuning my protocol.

That said, there are several adjunct therapies that have worked in conjunction with my ever-changing protocol of medication and supplements. I call these adjunct or complementary therapies because they supported, but did not replace, my medical protocol. These therapies would not have worked alone, because first and foremost I needed to treat the infections of Lyme disease, babesiosis, ehrlichiosis, and possible bartonella. In fact, before I was accurately diagnosed with these tick-borne illnesses, I tried some alternative therapies and they did not help, because the underlying infections were too severe. Once I started appropriate treatment, the following therapies helped me heal:

Integrative Manual Therapy

Developed by Sharon Giammatteo, Ph.D., this hands-on technique uses light touch to facilitate healing. The therapy combines cranial therapy and neurofascial processing. In her book Body Wisdom: Light Touch for Optimal Health, Giammatteo explains that cranial therapy is “a manual approach to correcting problems of the cranium, as well as the tissues and structures within in. Cranial therapy works by exerting a gentle force on the head and the body. The force decompresses dysfunctional areas and facilitates proper biological rhythms.”[1]

Don’t be alarmed by the word “force”; it’s simply someone gently placing a hand on your head or body, making barely perceptible movements. The technique is lighter than massage. When I’m struggling with brain fog or other symptoms of Lyme brain, my integrative manual therapist might place one hand on my forehead and one hand on my lower back, to enable drainage. This is part of neurofascial processing, which is just placing hands on different parts of the body to get systems working in sync.

The great part about Integrative Manual Therapy is that a lot of it can be done at home, either by yourself or with the help of someone else. Techniques are outlined in Giammatteo’s book. You can also work with a trained facilitator. Some D.O.’s (Doctors of Osteopathic Medicine) do manual therapy, and some physical therapists do it. This means these appointments might be covered by insurance. You can also pay out-of-pocket for a private practitioner. At the height of my illnesses, I did Integrative Manual Therapy twice a week; now I do it twice a month.

Neurofeedback

You may have heard of biofeedback, which uses the body’s own feedback to regulate systems. Neurofeedback works in the same way, except on the brain instead of the body. This non-invasive technique uses your brain’s own feedback to help it work optimally, whether that is being able to rest, thinking more clearly, or having less intrusive thoughts.

During neurofeedback appointments, I sit in a comfortable lounge chair. The practitioner affixes small sensors on my head and ears. These sensors are connected to a computer that receives feedback from my brain, and then relays information back to my brain that helps it work better. During this process, I watch kaleidoscope-style images on a screen (though it’s fine to close your eyes), and listen to soft music. Sometimes as certain feedback is being sent, the music skips. That’s all I notice during the entire session. Otherwise I just sit and relax, and let my brain do its work.

I started neurofeedback when I saw a sleep specialist for insomnia. In conjunction with sleep medication, neurofeedback helped my brain retrain itself to turn off for rest. It toned down, though did not eliminate, my hallucinogenic nightmares. It also helped me to be able to fall asleep for a nap during the day, which my exhausted body desperately needed.

There are different types of neurofeedback. Some work on just one part of your brain at a time, while others work on the whole brain. I do NeurOptimal, which helps the whole brain at once. My practitioner thinks that working on only one part of my brain at a time might actually exacerbate, not help, some of my neurological issues.

Some sleep specialists do neurofeedback, which can be covered by insurance. There are also private practitioners that you can find through NeurOptimal. When my insomnia was raging, I did neurofeedback three times a week. Now that I am in remission, I do it once a month.

Physical Therapy

Physical therapy is an important way to rebuild muscle strength and stamina—when you are ready. I made the mistake of starting physical therapy too early in my treatment, and paid for it. Because infections were ravaging my body, exertion only made them worse. Before my babesiosis was adequately treated, thirty seconds on a stationary bike gave me a migraine and sent me straight back to bed.

When I was bedridden, people used to say to me, “You should get up and go for a walk. It’ll make you feel better.” Just walking to the end of the driveway made me feel much, much worse. You know your body best. If you had the flu, you would not go for a walk. You would wait until you felt better. I had to wait until my infections were cleared up enough before I could do physical therapy consistently, and have it make a positive difference. Talk with your LLMD about when physical therapy would be appropriate for you.

Make sure your physical therapist understands the way your illnesses impact your body, and has you go at a slow pace. You likely won’t be able to do a typical graded physical therapy program where you steadily increase time and weights. Instead, you’ll make progress, take some down turns, then make progress again. When I first started physical therapy, all I did were some gentle stretches and slow manipulations with my fingers and toes. It took months to work up to twelve minutes on a stationary bike. I added weights very, very slowly. Now, after regaining strength and learning to pace myself, I am able to ski, walk, paddleboard, kayak, and swim. (For more on my slow but steady physical therapy, see my poem “Never Say Never”).

Talk Therapy

Being sick, especially for an extended period of time, can take an emotional toll. Moreover, Lyme disease can cause anxiety and depression. Your LLMD or a psychiatrist may prescribe medication to help your mood, but it’s also really helpful to talk about your feelings with an objective professional. You want someone who believes your illness and believes in you. Someone who will allow you to vent on the tough days and, more importantly, give you some coping skills to handle those hard times. My own therapist also helped me examine relationships and patterns from my past that informed my response to illness. She helped me to accept and love my illnesses, and myself. By encouraging me to be gentle with myself, she helped me not to wallow in the past, but to learn from it so I could move forward.

These are the therapies that have helped me. It is not an exclusive or exhaustive list; other therapies that I haven’t tried, like reiki, light massage, rife machines, and hyperbaric oxygen chambers, may be helpful to other patients. I encourage you to discuss possible adjunct therapies with your LLMD to determine which would be best for you.

[1] Giammatteo, Sharon, Ph.D. Body Wisdom: Light Touch for Optimal Health. Berkeley, California: North Atlantic Books, 2002 (21).

Jennifer Crystal

Writer

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

 

Latest ILADS 2021 Meeting

https://www.treatlyme.net/guide/fresh-ideas-from-2021-ilads  Video Here

The Latest from ILADS 2021 Annual Meeting

Here is the latest from ILADS 2021 Annual Meeting. During most ILADS annual meetings I find two or three new ideas I use in my treatments at Marty Ross MD Healing Arts. Watch the video clip in top link from my weekly Lyme Q&A webinar, Conversations with Marty Ross MD, for a full explanation of new insights and treatment ideas I learned this time.

  • Learn about lumbrokinase for Bartonella plaques and nests.
  • See how peptides, like BPC-157, could save the day.
Recommended Supplements

In the video I discuss lumbrokinase and BPC-157. Here is how I recommend using each of these supplements.

  • Lumbrokinase 20 mg, 1 pill 2 times a day. Do not take food, medicines or supplements beginning 1 hour before through 1 hour after taking.
  • Body Protection Compound (BPC-157) 500 mcg, 1 pill 2 times a day. Discuss using higher doses with your physician or health care provider.

You can find these products at Marty Ross MD Supplements.

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About the Author

Marty Ross, MD is a passionate Lyme disease educator and clinical expert. He helps Lyme sufferers and their physicians see what really works based on his review of the science and extensive real-world experience. Dr. Ross is licensed to practice medicine in Washington State (License: MD00033296) where he has treated thousands of Lyme disease patients in his Seattle practice. 

Marty Ross, MD is a graduate of Indiana University School of Medicine and Georgetown University Family Medicine Residency. He is a member of the International Lyme and Associated Disease Society (ILADS) and The Institute for Functional Medicine.

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Head Trauma, Prolonged Neurological Symptoms, & Lyme Disease

https://www.lymedisease.org/head-trauma-lyme-disease/

Head trauma, prolonged neurological symptoms, and Lyme disease

By Daniel A. Kinderlehrer MD

When Brian finished college, he had dreams of becoming a professional hockey player. Unfortunately, he got a rough blow to the head and sustained a concussion. Although he didn’t lose consciousness, he developed a host of symptoms that led to leaving the ice.

He complained of daily headaches that were worse with exertion, physical and mental fatigue, decreased concentration and short-term memory, joint pains, muscle pains, muscle cramps, chest pain, sore soles that were more tender when first getting out of bed, paresthesias (pins and needles sensations) in his fingers and toes; daytime sweats and urethritis—pain on urination.

Sound familiar? Brian had spent time in upstate New York and went to college in Massachusetts. He had never seen a tick attachment nor an EM rash. An alert physician ran a Lyme Western Blot test but the only positive band was the IgG 18 kd, which was interpreted as negative.

The plot thickens

Because of his ongoing urethritis, Brian was put on Cipro for one week and all his symptoms flared. Later he was prescribed Levaquin, but he suffered the same reaction and stopped it after two days

Brian got checked out by specialists at a highly regarded medical center, but they could shed no light on the matter.

Brian’s symptoms were getting worse, including a sore throat with swollen glands. He had another Lyme Western Blot (performed at Labcorp) in which the IgM was now reactive at 23 kd. This was interpreted as positive for Lyme disease.

He was then prescribed doxycycline 100 mg twice daily. He herxed for five days and over the next two months he experienced mild improvement.

Post-Concussive Syndrome

I’m going to take a break from Brian to discuss post-concussive syndrome (PCS), symptoms that persist after a traumatic brain injury (TBI). The symptoms of PCS include headache, dizziness, neck pain, exercise intolerance, irritability, anxiety, sleep problems, diminished cognition with memory loss, poor concentration and difficulty with problem-solving, noise and light sensitivity.

In 2019, Sergio Azzolino and colleagues published a report entitled “The prevalence of Lyme disease and associated co-infections in people with a chronic post-concussive syndrome.”1 They wondered if patients with TBIs who continued to have symptoms of post-concussive syndrome a year after their head trauma had undiagnosed Lyme disease.

They did a retrospective chart review of patients who fit the criteria of ongoing symptoms of PCS at least a year after suffering a TBI. To be included in the study, patients had to have a negative brain computed tomography (CT) or magnetic resonance imaging (MRI) scan. Participants were excluded from the study if they had previously tested positive for Lyme and/or co-infections; had two weeks of antibiotics since the date of injury; had been diagnosed with a primary neurological illness (e.g., seizure disorder or multiple sclerosis), or had post-stroke syndrome.

The researchers tested 69 patients who met those criteria: 38% had a positive IgM Western Blot and 26% had a positive Western Blot IgG. They also tested 18 patients without a history of TBI but who had symptoms consistent with PCS: 72% had a positive IgM Western Blot and 33% had a positive IgG Western Blot.

IgM in Lyme disease is not only acute infection

The IgM antibody is considered an acute phase reactant—acute in medicine means recent onset. In most infections, the IgM antibody to a pathogen starts rising soon after the onset of infection. Then begins its decline about a month later, when IgG–the chronic phase reactant–starts increasing. Usually, the IgM becomes negative and the IgG remains elevated while the infection is still active, but IgG can remain elevated long after the infection has been eradicated.

However, this is not the case with Lyme disease. In Lyme, the IgM does indeed rise early—it is usually detectable within one to two weeks. But if the infection is untreated, the elevation in IgM will persist.2,3 This may be due to changes in outer surface proteins on the bacteria that continually signal a new infection to our immune systems.

In the series by Azzolino et al., IgM positivity was disproportionately higher than IgG.  And the same was true in the group of people who had the neurological symptoms of PCS without a history of TBI.

Most of my patients present with chronic persistent Lyme disease that has not been previously treated—they have been ill for years or even decades. The vast majority have Western Blot IgM positivity disproportionate to IgG positivity. It is not unusual for these patients to be told that the positive IgM is a false positive, since they have been ill for a long time and do not have an acute infection.

Prolonged neurological symptoms after TBI may be caused by Lyme disease

It turns out that a significant number of folks who get banged in the head and develop prolonged neurological symptoms were already suffering from a dormant infection with Borrelia burgdorferi, the Lyme pathogen. We know that some people get a tick attachment but don’t see a rash and don’t experience acute Lyme disease—but weeks, months or years later they become ill with chronic Lyme disease.

Sometimes, the symptoms develop gradually, but often they develop almost overnight. In the latter situation, there is usually a trigger—a viral infection, mold exposure, taking an agent that suppresses the immune system like corticosteroids, a vaccine, emotional stress, and trauma of any kind—especially head trauma.

Dr. Chad Prusmack is a neurosurgeon in Denver who sees a lot of patients with head trauma. He is unique among neurosurgeons in that he also diagnoses and treats Lyme disease. Chad told me that in his clinical experience, a third of his patients with PCS have Lyme disease and improve with appropriate treatment.

He also notes that most of these patients have issues with mold sensitivity and mold toxins, as well as dysautonomia, especially POTS—Postural Orthostatic Tachycardia Syndrome–and they improve considerably when they are stabilized.

Back to Brian

When I initially saw Brian, I told him I didn’t know how much his neurological symptoms were still attributable to the TBI he sustained over a year earlier as opposed to symptoms caused by the tick-borne diseases.

I suspect many readers of Lymedisease.org have already surmised that Brian was suffering from both Lyme disease and bartonellosis. Morning pain on the soles of the feet, urethritis, daytime sweats, and Herxheimer reactions to Cipro and Levaquin are big tip-offs.

The short story is that with treatment Brian experienced a 100% remission. He wisely decided not to pursue a professional career on the ice, but instead went to medical school. At the time of this writing, he is completing an orthopedic residency.

When Brian was a fourth-year medical student, I asked him what attending physicians on the wards had to say about Lyme disease. His reply: “They think it’s a joke, it’s not real.” This level of denial among mainstream physicians is, distressingly, still quite common.

I talked with Dr. Azzolino recently. He told me his clinical experience has been similar to that of Dr. Prusmack, who found that treating his long-term PCS patients for their tick-borne infections “…resulted in a dramatic improvement in function and reduction in disability” in this patient population.

The bottom line is that head trauma can activate dormant infections that manifest with chronic neurological symptoms that overlap with those of PCS. Anyone with head trauma with persistent PCS should get checked for Lyme disease.

Dr. Daniel Kinderlehrer is an internal medicine physician with a private practice in Denver, Colorado, devoted to treating patients with tick-borne illness. He is the author of  Recovery From Lyme Disease: The Integrative Medicine Guide to the Diagnosis and Treatment of Tick-Borne Illness.

References

  1. Azzolino S, Zaman R, Hankir A, Carrick FR. The prevalence of Lyme disease and associated co-infections in people with a chronic post-concussive syndrome. Psychiatr Danub. 2019 Sep;31(Suppl 3):299-307. PMID: 31488744.
  2. Craft JE, Fischer DK, Shimamoto GT, Steere AC. Antigens of Borrelia burgdorferi recognized during Lyme disease. Appearance of a new immunoglobulin M response and expansion of the immunoglobulin G response late in the illness. J Clin Invest. 1986;78(4):934–939.
  3. Steere AC, et al. Lyme arthritis: correlation of serum and cryoglobulin IgM with activity, and serum IgG with remission. Arthritis Rheum.1979;22(5):471-83

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Bartonella for Clinicians

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Bartonella for Clinicians

Introducing IGeneX Bartonella ImmunoBlots
Jul 15, 2021

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A Tick Bite at Age 6, Followed by More Than 40 Years of Health Problems

https://www.lymedisease.org/edmisten-tbdwg-lyme-comments/

A tick bite at age 6, followed by more than 40 years of health problems

Marta Edmisten gave the following as public comments at the August 26 meeting of the federal Tick-Borne Disease Working Group.

Good morning, my name is Marta Edmisten. I am here today to talk about the impact tick-borne disease has had on me.

I had my first known tick bite around age 6, in 1980. I found a bump behind my right earlobe. I vividly remember my mom dropping the wriggling tick into a medicine dosing cup full of rubbing alcohol, which immediately turned red.

That was two years before Borrelia burgdorferi was officially identified and even more years before testing was available.

I am now 47 and currently live with two strains of babesiosis, two strains of Bartonella, active Lyme disease, as well as tick-borne relapsing fever.

My testing is recent and not “borderline.” This is after over five years of treatment. I am here to tell everyone that the adage that tick-borne disease is hard to get and easy to get rid of is simply not true for so many of us.

Within a year of my first tick bite, I developed endocrine issues so worrisome that I was followed by the head of endocrinology at DC’s Children’s Hospital for fourteen months. No cause was ever discovered.

Problems in school

By age 8, I suddenly developed attention and reading issues after having flawless testing results in kindergarten. I also struggled with a sudden onset of allergies and asthma. My joints would swell out of nowhere and ache. I was screened for juvenile rheumatoid arthritis. The results were negative.

By middle school I suffered from anxiety, depression, depersonalization, suicidal ideation, insomnia, memory issues, and confusion.

I was officially diagnosed with ADHD and dyslexia after getting less that 400 on the SATs. My GPA at the time was stellar. I worked really hard.

I got my second known tick bite in Rhode Island while I was in college. I had a bull’s-eye rash all over my neck. I was told it was a spider bite and sent home.

I was diagnosed with  SMI—serious mental illness—soon thereafter. For over two decades, I saw preeminent psychiatrists in Boston and New York City. I took all the pills–nothing worked. I was hospitalized multiple times. I voluntarily underwent electroconvulsive therapy (ECT) treatments.

By the time I was 36, my arms and legs often twitched uncontrollably and soon fatigue and pain made running my successful business impossible. At 40, my vision was so poor I was unable to read, walking was impossible, and I became incontinent. Multiple autoimmune diseases were suspected. I was finally tested for Lyme disease and co-infections in 2016. I started treatment soon thereafter.

I am no longer on psychiatric medications, just things to help me sleep. Physically, I am better, but I’m still extremely disabled. Just last fall, I spent months not recognizing my home or remembering that my closest friend had passed away over a year earlier.

I look perfectly normal — as long as I am seated. I live with extreme mobility issues, drenching sweats, intermittent fevers, neuropathy, immune dysfunction, pain that often makes sleep impossible, and cognitive issues that make my dream of becoming a social worker out of reach at this time. There are so many people with my story.  Please believe us.  Please help us.

Marta Edmisten lives in Maryland.

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