Archive for the ‘Lyme’ Category

Lyme Pseudothrombophlebitis in a Young Child

https://danielcameronmd.com/lyme-pseudothrombophlebitis-in-a-young-child/

LYME PSEUDOTHROMBOPHLEBITIS IN A YOUNG CHILD

boy, child, sitting, alone

This case report, featuring an 8-year-old boy, illustrates, once again, the unusual presentation that can occur with Lyme disease. [1] The child was admitted to the emergency department at Jefferson University Hospital in Philadelphia with swelling and pain in his knee and calf.

The pain had been ongoing for one week. “He described the pain as throbbing, worse with movement, and improved with rest,” writes Sandelich and colleagues.  Three days earlier, the boy had visited a different emergency department and was diagnosed with a muscle sprain following results from an X-ray.

The boy’s pain, however, continued, and an ultrasound of the lower extremity was obtained. It revealed “a 13 x 6 x 2.7-cm heterogeneous mass with solid and cystic components in the left calf,” writes Sandelich.

An MRI revealed several findings that were consistent with a large collection in the left gastrocnemius muscle with surrounding myositis involving the gastrocnemius muscle.

A Lyme Western blot test was positive, and the child was diagnosed with Lyme pseudothrombophlebitis. He was treated successfully with intravenous cefazolin, followed by 4 weeks of amoxicillin.

“A known complication of a ruptured popliteal cyst (fluid collection behind the knee) is a pseudothrombophlebitis,” explains Sandelich. A popliteal cyst, also known as a Baker’s cyst, has been reported in Lyme disease.

The authors caution, “The clinical presentation in this case is similar to that of a DVT [deep venous thrombosis), and obtaining an ultrasound of the deep leg veins is imperative.”

References:
  1. Sandelich S, DePiero A. An Interesting Presentation of Lyme Pseudothrombophlebitis. Pediatr Emerg Care. 2019.

__________________

**Comment**

I find it interesting that when I search popliteal cyst, Lyme disease is not mentioned. Most doctors are not going to even think about it, yet swollen knees are a hallmark symptom with Lyme and in fact was one of my first symptoms along with a fever.  I take issue with the statement that it is an “unusual” presentation.  In my experience it is very common – particularly in children.

I often wonder what would have happened if my case was caught at this stage.  I imagine I would have fared much better.  Unfortunately, like so many, I was left to languish for months (some languish for years) before the infection became widely systemic and much harder to treat. Telling patients to “wait and see” is dooming them to often life-long suffering when early treatment could have set them right.

My doctor told me I had “washer woman’s knee” from scrubbing the floor, despite standing and using a mop!
You can’t make this stuff up.

 

Lyme Mind Podcast: Dr. Leigner & Dr. Horowitz

https://lymeninjaradio.com/2019/12/07/255-leigner-horowitz/?

#255: Lyme Mind 2019 – Drs. Leigner & Horowitz

In this episode you will learn three main things:

  1. How Disulfuram is being used to treat Lyme Disease.
  2. Why Dr. Richard Horowitz is combining Dapsone and Disulfuram.
  3. How these treatments have lead to long term Lyme remission.

Kenneth Leigner, MD

Dr. Leigner practices in Pawling, New York, and has been actively involved in diagnosis and treatment of Lyme disease and related disorders since 1988. His work has focused on the serious morbidity and (occasional) mortality that can comes from chronic and neurological Lyme Disease.

Richard Horowitz:

Dr. Horowitz, the best-selling author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease,” has presented at numerous scientific conferences on Lyme Disease and the role of co-infections and toxins in Lyme Borreliosis.

___________________

For more:  https://madisonarealymesupportgroup.com/2016/10/09/mycobacterium-drugs-for-ld/

https://madisonarealymesupportgroup.com/2019/06/03/disulfiram-in-the-treatment-of-lyme-babesiosis-3-case-reports/

https://madisonarealymesupportgroup.com/2019/07/14/disulfiram-breakthrough-drug-for-lyme-other-tick-borne-diseases/

https://madisonarealymesupportgroup.com/2019/07/26/is-disulfiram-the-magic-bullet-for-chronic-lyme-disease/

https://madisonarealymesupportgroup.com/2019/10/15/disulfiram-psychosis-update/

https://madisonarealymesupportgroup.com/2019/10/27/disulfiram-psychosis-update-2/

https://madisonarealymesupportgroup.com/2019/09/18/dr-liegner-interview-on-disulfiram/

https://madisonarealymesupportgroup.com/2019/12/27/an-old-drug-for-alcoholism-finds-new-life-as-cancer-treatment/

 

 

Practice Guidelines For the Psychiatric Evaluation of Adults, 3rd Edition

https://psychiatryonline.org/doi/10.1176/appi.books.9780890426760.pe02

Practice Guidelines for the Psychiatric Evaluation of Adults, Third Edition

Statement 4. APA suggests (2C) that the initial psychiatric evaluation of a patient also include assessment of the following:

  • Height, weight, and body mass index (BMI)

  • Vital signs

  • Skin, including any stigmata of trauma, self-injury, or drug use

  • Cardiopulmonary status

  • Past or current endocrinological disease

  • Past or current infectious disease, including sexually transmitted diseases, HIV, tuberculosis, hepatitis C, and locally endemic infectious diseases such as Lyme disease

  • Past or current neurological or neurocognitive disorders or symptoms

  • Past or current symptoms or conditions associated with significant pain and discomfort

___________________

**Comment**

https://madisonarealymesupportgroup.com/2019/12/31/psychiatric-disorders-are-infectious-agents-to-blame/

Excerpt:

Microorganisms capable of his latency include a diverse range of taxa including viruses such as the herpesviruses herpes simplex virus types 1 and 2, cytomegalovirus, and Epstein Barr virus as well as retroviruses such as human immunodeficiency virus, measles virus, bacteria such as Chlamydiae and Borreliae, and protozoa such as Toxoplasma gondii…(See link for article)

They should have also included Bartonella as it has caused a host of psychiatric issues:  https://madisonarealymesupportgroup.com/2019/03/24/cat-scratch-disease-caused-teens-schizophrenia-like-symptoms-report-says/

Excerpt:

Various strains have been found in eye fluid, the heart (myocarditis and endocarditis), and cysts, and can infect by nearly anything puncturing the skin and exchanging bodily fluids – including needles. Evidence also suggests congenital transmission.

Symptoms are largely associated with where the blood flow is compromised. The reason many have pain in the soles of their feet is due to inflammation caused by microvascular trauma. It has been known to cause cysts around dental roots leading to chronic and hard to diagnose head and face pain as well as root canals. This microvascular trauma is also to blame for brain issues causing psychological issues such as anxiety, anger, and suicidal thoughts, since the small vessel disease affects executive function. A cog is literally caught in the wheel. As neurotransmitters become depleted due to overstimulation, depression rears its ugly head. A vicious cycle ensues.

https://madisonarealymesupportgroup.com/2019/12/21/high-level-of-psychiatric-disorders-found-in-individuals-with-chronic-pain/

https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/  Most doctors are oblivious to the mental issues that can arise from tick-borne illnesses.

Excerpt:

One-third of psychiatric inpatients showed signs of a Borrelia infectionaccording to Holdorf Medical Group based on a 2002 published study in the Journal of Psychiatry. The severest behavioral symptoms were reversed or improved with proper treatment, but not psychiatric medications alone.

Some of these symptoms include but are not limited to:

Memory impairment or loss (“brain fog”)
Dyslexia and word-finding problems
Visual/spatial processing impairment (trouble finding things, getting lost)
Slowed processing of information
Psychosis
Seizures
Violent behavior, irritability
Rage attacks/impulse dyscontrol
Anxiety
Depression
Panic attacks
Rapid mood swings that may mimic bipolarity (mania/depression)
Obsessive compulsive disorder (OCD)
Sleep Disorders
Attention deficit/hyperactivity disorder
(ADD/ADHD)-like syndrome
Autism-like syndrome
Crying spells

 

Pros & Cons of Doxycycline For Children With Lyme Disease

https://danielcameronmd.com/pros-and-cons-doxycycline-children-lyme-disease/

PROS AND CONS OF DOXYCYCLINE FOR CHILDREN WITH LYME DISEASE

There are times when doctors need to consider whether or not to prescribe doxycycline for children with Lyme disease. The antibiotic is indicated for other tick-borne illnesses including Rocky Mountain Spotted Fever, Ehrlichia and Anaplasmosis. But doctors often avoid prescribing doxycycline to young children for fear that it may cause tooth staining, particularly when used in children less than 8 years old.

Tetracyclines, including doxycycline, are typically not recommended for treating young children with tick-borne diseases because the antibiotic may cause permanent staining of the teeth, explains Wormser and colleagues in a recently published article, “Is Doxycycline Appropriate for Routine Treatment of Young Children With Erythema Migrans?” ¹

In the article, Wormser discusses the risk to benefit ratio of prescribing the antibiotic.

“Tetracycline-induced dental staining does not spontaneously resolve, may have adverse psychological effects, and families may incur considerable expense to correct the problem.”

This risk is greatest for younger children, he explains. “Because calcification of permanent teeth is largely complete by 5–6 years of age, children who are <4 years of age are at highest risk.”

Doxycycline introduced

However, the risk of dental staining was expected to be less after doxycycline, a tetracycline derivative, was introduced to the market.

“Doxycycline was reported to bind calcium less avidly than does tetracycline, which could explain why doxycycline may be less likely to cause dental staining,” writes Wormser.

In 2 small studies, which enrolled 89 children, doxycycline did not lead to dental staining. However, the studies were of short duration and used lower doses of the antibiotic than is typically prescribed for tick-borne illnesses.

“These new studies led to the recommendation in 2018 by the Committee on Infectious Diseases of the American Academy of Pediatrics (AAP) that a course of treatment with doxycycline (for up to 21 days) is safe to prescribe for young children with any infection responsive to this agent, specifically including early Lyme disease,” writes Wormser.

Risk to benefit ratio

“The recommendation to use doxycycline in young children with early Lyme disease should be based on assessment of the risk to benefit ratio of use of this drug compared with that of other recommended antibiotics,” writes Wormser.

“The recommendation to use doxycycline in children <8 years of age should require an assessment of how much doxycycline had previously been taken by a patient, including total dosage, because the risk of dental staining is directly related to cumulative exposure,” he adds.

Based on the number of Lyme disease cases reported each year and the percentage of children likely affected, Wormser estimates that “more than 30,000 children <8 years of age could potentially be treated with doxycycline each year.

If the risk of dental staining were even just 1 in 1000 (0.1%),” he explains, “this would translate to >30 children annually who would develop dental staining from taking doxycycline for erythema migrans.

Use of doxycycline clearly is indicated to treat young children with Rocky Mountain Spotted Fever or with other very serious infections for which doxycycline is preferred,” he adds.

Single dose of doxycycline for a tick bite

In addition, the authors discuss treating a deer tick bite with a single dose of doxycycline to prevent Lyme disease. “It seems unlikely that one dose would cause dental staining in young children,” writes Wormser.

However, the authors fail to mention that no studies have demonstrated the effectiveness of a single dose of doxycycline in preventing chronic manifestations of Lyme disease.

Other antibiotics, including amoxicillin, remain an alternative for patients who do not have Rocky Mountain Spotted Fever, Ehrlichia or Anaplasmosis.

Editor’s note: I use a risk to benefit ratio approach in my practice when treating Lyme disease.

References:
  1. Wormser GP, Strle F, Shapiro ED. Is Doxycycline Appropriate for Routine Treatment of Young Children With Erythema Migrans? Pediatr Infect Dis J. 2019 Nov;38(11):1113-1114.

__________________

For more:  https://madisonarealymesupportgroup.com/2017/03/24/one-pill-of-doxy-only-reduces-prevalence-of-rash-not-lyme-disease/

Excerpt:  

Daniel J. Cameron, MD MPH, states there has only been one study (Nadelman et al) on the effectiveness of 1 pill of doxycycline and only found a reduction in the number of erythema migraines (EM) rashes compared to the placebo group.  According to him, the IDSA 1 pill of doxy approach started in 2006 despite the fact that three previous prophylactic antibiotic trials for a tick bite had failed.

https://madisonarealymesupportgroup.com/2016/11/16/will-two-pills-of-doxy-prevent-lyme/

Excerpt:

Only one study in 2001 tested this hypothesis at one hospital in New York.

For the study, the bullseye rash was the diagnostic criteria to determine if doxy prevented LD. The study actually showed that people bitten by nymphs were more likely to develop a bullseye rash and therefore diagnosed with LD in comparison with those bitten by an adult tick. None of those bitten by adult ticks developed a bullseye rash.

The Bullseye is a poor indicator of LD.

Only 50% with LD got any kind of rash and only 9% developed a bullseye.

Two pills used at the time of tick bite by a nymph prevented people from getting the bullseye – so they were not diagnosed as having LD and were excluded from the study.

So, will 2 pills of doxy prevent Lyme?

No.

 

Traveling With Tick-borne Illness

by Jennifer Crystal

8/5/19

For many people, summer means travel, but for Lyme patients, vacationing is not as simple as it was in our healthier days. I miss being able to just throw a pair of pajamas and a toothbrush in a bag and take off for the weekend. Now my baggage is bigger and heavier. I have medications and supplements, specialty foods, and extra pajamas (in case of night sweats) that I have to bring along. I need to consider my daily schedule and my energy levels. Travel is still possible, but I’ve had to make some adjustments.

Many patients write with questions about travel. Can they get on a plane with a PICC line in? Can they bring their medications and supplements on a plane? How far can they travel? I responded to some of these questions in my recent Dear Lyme Warrior…Help post. But here’s a longer practical guide to help you determine if, how, and when you might travel, and what you should keep in mind when you do so.

  • Travel abilities—Your stamina for travel will fluctuate. This is probably the most important lesson I can impart. When I was first ill with Lyme and two co-infections babesia and ehrlichia, I could barely walk, let alone travel. It was exhausting to sit in the car and go to a doctor’s appointment. Someone else always had to drive. As my physical and neurological symptoms improved over more than a decade, I have been able to slowly increase my ability to travel. First I could drive myself short distances. Then I could take a short, direct flight if someone was with me. I’ve worked up to a four hour flight now. Hopefully I’ll be able to go even farther in the future, but I also have to remember that progress isn’t linear. With a relapsing condition like Lyme, there will be times when it will seem easy for me to fly to Florida, and times when it will be difficult for me to drive for an hour.
  • PICC lines—Yes! You can fly with a port! The important thing is to think about timing and supplies. How long will you be away? If you have a PICC line, how many boluses of medication will you need? Contact your airline to see about bringing your boluses on the plane, especially since most need to be refrigerated. Some airlines allow you to bring them through security in a cooler, but you should make them aware. Be sure to have your written prescription with you. Next, think about where you will store your boluses upon arrival. Is there a secure, easily accessible refrigerator? Be sure to bring extra boluses and extra supplies, and to have the emergency contact information of your doctor. You may also want to ask your doctor what you should do if there’s a problem with your line while you’re away (is there a nurse you can call? Should you go to a local medical clinic?).
  • Medications and supplements—When flying, I always carry on all of my medications and supplements in their original bottles. You do not want to run the risk of your medicine being lost in a checked bag. Some people get written prescriptions from their doctors in case they get questioned by airline security. I have never had this problem—prescription bottles with current labels have always sufficed, even when I went out of the country—but you might need this information if you’re traveling with liquid medication (for more information on flying with medication, visit tsa.gov and click “Travel Tips”). If you’re traveling by car, make sure your pill bag is in the car itself, not in an overheated trunk. I tape closed all the compartments of my weekly pill box, so they don’t spill all over my bag. I always bring more pills and supplements than I’ll actually need, in case I get stuck somewhere.
  • Health information sheet—Write out a list of your diagnoses, your medications and supplements, your allergies, your dietary restrictions, your practitioners and their contact information, the name and number of an emergency contact, and any other pertinent medical information. I keep a copy of this list in my suitcase, a copy in my purse/wallet, and an e-copy on my phone.
  • Pharmacy and doctor information—In case you do get stuck somewhere and need an emergency refill, find out before you go if your pharmacy has a store near your destination, and if they can transfer your prescriptions. Also be sure to have your doctor’s phone number easily accessible, and have it written on your health information sheet.
  • Food—Make sure you will be able to get foods that fit your dietary restrictions at your travel destination. Plan in advance—read restaurant menus online, research what grocery stores are nearby, talk to your hosts, call your hotel to see if there will be a refrigerator in your room. I always pack extra gluten-free snacks, even if I wind up putting them all back in my cupboard when I get home. Remember to bring meals and snacks in your carry-on, too. Additionally, I always carry a water bottle, and I bring rehydration tablets if I’m going to be somewhere where I won’t be able to find electrolyte-enhanced water (which I often need due to nightsweats).
  • Plan extra recovery time before and after your travel—Depending on how far you are traveling, you may need extra time to rest upon arrival. When I fly somewhere, I don’t do anything else on the travel day besides sleep and eat, and often I need the following day to recuperate, too. When I travel by car, I make sure that there will be a quiet place for me to nap upon arrival. Build in a couple days for recuperation upon your return, too. This means in general that you will need more time for travel—a three-day trip may turn in to a week-long endeavor.
  • Budget—The reality of traveling with Lyme disease is that it’s probably going to cost more than if you weren’t ill, especially if you’re a budget-minded traveler like me. I used to take red-eye flights or make multiple connections, because those options cost less. I can’t do that anymore. In order to save enough energy to function at my destination, I need to take direct flights at times that work well in my schedule, and that’s more expensive. To do otherwise though would jeopardize my health, and that would be even more expensive.
  • Have a buddy!—It’s much, much easier to travel when you’re accompanied by someone who understands your needs. Having someone to carry your bags, to drive, to help you navigate a new area, to help you find appropriate foods, all this makes travel much more feasible for Lyme patients. Make sure your travel companion is aware of your needs and how they might impact your itinerary. (For example, if you need to nap every afternoon, will there be a way for you to do that without disrupting everyone else’s day? Or will others be okay taking a midday siesta, too?).
  • Ask yourself, is it worth it?— Always ask yourself, is the distance of this travel, and the energy it will take out of me, worth it? Is this someplace you really want to go or someone you really want to see? Will the travel jeopardize your health? Think about costs of travel not just in terms of financial costs, but also in terms of costs to your health, including downtime.

Wishing you safe travels to farther and farther destinations!

Jennifer CrystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com.