Archive for the ‘Inflammation’ Category

Neuronal Loss or Dysfunction in Patients With Early Lyme

https://www.ncbi.nlm.nih.gov/pubmed/31076877/

2019 May 10. doi: 10.1007/s00415-019-09359-0. [Epub ahead of print]

Neuronal loss or dysfunction in patients with early Lyme neuroborreliosis: a proton magnetic resonance spectroscopy study of the brain.

Garkowski A1, Kubas B2, Hładuński M2, Zajkowska J3, Zajkowska O4, Jurgilewicz D2, Zawadzki R5, Garkowska E5, Pancewicz S3, Łebkowska U5.

Abstract

BACKGROUND:

We hypothesized that since Borrelia burgdorferi causes systemic inflammation and infects the brain, it may lead to alterations in cerebral metabolism, as measured by 1H-magnetic resonance spectroscopy (1H-MRS). The purpose of our study was to determine whether 1H-MRS could detect brain metabolite alterations in patients with early Lyme neuroborreliosis (LNB) in normal-appearing brain tissue on the conventional magnetic resonance imaging (MRI).

METHODS:

Twenty-six patients diagnosed with early LNB and twenty-six healthy volunteers as a control group have been involved in the study. All of them underwent routine MRI protocol using 3.0-T MRI scanner. 1H-MRS examinations were performed with repetition time (TR) = 2000 ms, and echo time (TE) = 135 ms. Single voxels were positioned in the anterior and posterior parts of the right and left frontal lobes.

RESULTS:

We found a statistically significant decrease of the N-acetylaspartate/creatine ratio within the anterior part of the right and left frontal lobes (p ≤ 0.001 and p = 0.001 respectively) and in the posterior part of the right and left frontal lobes (p ≤ 0.001 and 0.031) in the patients with LNB.

CONCLUSION:

A significant reduction in NAA/Cr ratio in comparison with the controls suggests the presence of diffuse neuronal loss in patients with early LNB.

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For more:  https://madisonarealymesupportgroup.com/2019/01/30/characterization-of-brain-dysfunction-induced-by-bacterial-lipopeptides-that-alter-neuronal-activity-network-in-rodent-brains/

https://madisonarealymesupportgroup.com/2018/08/20/tick-borne-diseases-causing-autonomic-dysfunction/

https://madisonarealymesupportgroup.com/2019/05/21/chronic-inflammatory-demyelinating-polyneuropathy-as-an-autoimmune-disease-but-associated-with-bartonella-mycoplasma-viruses/

Let’s start doing these studies on chronically infected patients.

 

Category:

Inflammation, Lyme, research, Testing

Not All Headaches Are Alike: What’s Causing Your’s?

https://globallymealliance.org/lyme-disease-symptoms-headaches/

Headaches are a common symptom of tick-borne illness. Now that I’m in remission, I rarely get headaches. When I do, I’ve become adept at recognizing why I have them. Knowing the nuances of my headaches helps me determine whether my pain is Lymeor babesia related—or from something else entirely—and how to treat it. In short, I now know my own head as well as I know my own body.

I trained myself to recognize gradations and causes of headaches in part as a defense against people who thought they knew my head and body better than I did. In my worst days of battling tick-borne diseases, when I would complain to an acquaintance of a smashing migraine, they might say “It could be the weather.”

I wanted to scream. A headache that severe does not result from a shift in barometric pressure. Sometimes on muggy days with impending rain, I felt fine. My head was clear. I had no brain fog or pain. Other days, it would be beautiful and sunny outside, and I felt my head might explode. Healthy people were outside playing, encouraging me to enjoy the weather—“it’ll be good for you!”—when all I really needed was to take some migraine medication and sleep.

My headaches were caused by tick-borne illnesses, not by the weather. They also weren’t stress-related (though stress could aggravate them), or caffeine withdrawal. If you are bedridden with Lyme, wishing you could just take your head off and put it on the nightstand because it hurts so much, I am here to remind you that your pain is likely caused by a bug in your brain, not by any of these more typical causes.

It’s important to talk to your Lyme Literate Medical Doctor (LLMD) and perhaps get a scan of your brain to make sure nothing else—outside of the scope of tick-borne illness—is going on. It also helps to recognize different headache symptoms, so you can be as specific as possible when talking with your doctor. In my case, headaches related to Lyme took over my whole skull with a throbbing pressure, sometimes making me feel like my brain was getting too big for my skull. Pain caused by babesia was different; that tended to be a migraine, focused on the left side of my head. It was more searing, like someone sawing into the left side of my skull. Babesia headaches caused nausea and light sensitivity, while Lyme headaches caused a more generalized, tolerable pain.

Your own headache symptoms might be different. You might be suffering from co-infections I did not have, and suffer relapsing fevers that can cause their own species of headaches. Do you tend to get migraines for a few days in a row? Are your headaches local or generalized? Do they come on during Herxheimer reactions, or when you are pulsing antibiotics? If you’re female, are your headaches specific to a certain time of the month? Figuring out these nuances can help your LLMD treat you. I recommend keeping a written log, and marking any external factors (like stress or certain foods) that you think might be worsening your symptoms.

These days when I do get a migraine, it’s usually because I’ve pushed myself way too hard neurologically or physically. If they persist, I know my babesia is flaring. But the headaches I usually get now are the “normal” headaches healthy people thought I was suffering from years ago.

I’ve learned to differentiate between these headaches, too. Weather-related headaches mean slight pressure at the base of my skull, across both sides of my head. These I can’t do anything about until the storm passes, but the pain is minimal. Stress-related headaches cause inflammation only on the left side of the base of my skull, creating a knot that I can actually feel with my hand. It helps to rub the knot or get cranial-sacral therapy and sleep. Hormonal headaches feel like a buzzing across my temples, and are relieved with over-the-counter painkillers. Dehydration headaches are a tightening on the top of my head, signaling that I need to drink electrolyte-enhanced water.

All of these headaches are bearable. Getting these typical, that is, non tick-borne disease related headaches reminds me how very, very different they are than the agonizing headaches I suffered years ago. Learn the nuances of your own headaches, talk to your LLMD about them, and don’t let anyone but your trusted medical providers tell you what the cause of pain is in your own body.

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. 

 

 

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**Comment**

This article takes me back to when I wondered if there would EVER be a day without an excruciating, all encompassing headache. Thankfully, these headaches are a thing of the past due to appropriate treatment. One of the most effective drugs for me was minocycline due to its ability to cross the blood/brain barrier:  https://madisonarealymesupportgroup.com/2017/06/04/minocycline-for-ms-and-much-more/

Appropriate Babesia treatment was also crucial:  https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

For me initially, the headaches were in the meninges (the layer encompassing the entire brain). The inflammation and pain were beyond anything I’d ever experienced. Then they became occipital (base of where head meets neck).  Since I met numerous patients that had a Lyme diagnosis as well as Chiari, I had a MRI to rule that out:  https://madisonarealymesupportgroup.com/2016/04/02/chiari/  The MRI for me was normal – showing nothing that should cause the type of pain I was experiencing.

At this point, I tried MSM for pain/inflammation with good success & have been taking daily since:  https://madisonarealymesupportgroup.com/2018/03/02/dmso-msm-for-lyme-msids/

I also added in systemic enzymes for the same reasons, although both MSM & enzymes do 1,000 beneficial things:  https://madisonarealymesupportgroup.com/2016/04/22/systemic-enzymes/

https://madisonarealymesupportgroup.com/2018/03/05/how-proteolytic-enzymes-may-help-lyme-msids/

https://madisonarealymesupportgroup.com/2018/01/03/the-invisible-universe-of-the-human-microbiome-msm/

I recommend you discuss these options with your practitioner IF you’ve had sufficient antimicrobial treatment but are left with a lot of pain. These substances did not work for me while in treatment for active infection. It wasn’t until after stopping treatment that they worked for me; however, you may be different.

I do feel one mistake people make is quitting treatment too soon.  ILADS recommends being symptom-free for 2-3 months before stopping any treatment.  As you see from the article on Babesia, Dr. Horowitz recommends 9 months to a year of steady 3 weeks on, one week off treatment. Many quit this too soon.  It’s important to overlap treatment as well with numerous things hitting all the various angles.  It’s also important to switch meds when you reach plateaus.  My husband and I were treated with 4.5 years and have relapsed twice requiring 2-3 month stints of treatment. Make sure you see your practitioner if symptoms return.  Read the following articles for examples to discuss with your practitioner:

https://madisonarealymesupportgroup.com/2016/02/13/lyme-disease-treatment/

https://madisonarealymesupportgroup.com/2016/01/16/babesia-treatment/

https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2016/02/07/mycoplasma-treatment/

https://madisonarealymesupportgroup.com/2016/03/28/combating-viruses/

https://madisonarealymesupportgroup.com/2017/10/03/removing-parasites-to-fix-lyme-chronic-illnesses-dr-jay-davidson/

Category:

Activism, Babesia, Inflammation, Lyme, Treatment

Woman Wakes up With Black Eye & Swollen Face After Cat Scratch That Left Her on IV Drip For Four Days

https://www.dailymail.co.uk/health/article-7053027/Woman-42-wakes-BLACK-EYE-swollen-face-scratched-cat.html

Woman, 42, wakes up with a BLACK EYE and swollen face after being scratched by her cat that left her on an IV drip for four days

  • Heidi Plamping had been trying to calm down her cat, Storm, who was scared
  • The cat scratched her on the face and arm, but Ms Plamping wasn’t worried
  • Three days later she woke up with a mild reaction she thought was due to dust
  • But her face was soon covered in a rash, and she needed to visit the hospital 

By VANESSA CHALMERS HEALTH REPORTER FOR MAILONLINE

PUBLISHED: 21 May 2019 

A woman woke up with a black eye and swollen face after being scratched by her pet cat.

Heidi Plamping, from Canada, had been trying to calm down her cat, Storm, who had been freaked by a large dog.

As three-year-old Storm clambered on to her head for refuge, her claws caught Ms Plamping’s skin, drawing blood.

When the 42-year-old’s eyes and hands started to swell three days later, she thought dust mites were to blame.

But her face worsened over the next few days, to the point where it was covered in a rash.  She was given pills by her doctor and sent home.

However, they did not work and she needed to go to the hospital every day for four days to receive a drip of antibiotics to fight her swelling.

Doctors warned her cat scratches can be very serious – cats carry and can transfer bacteria, which, in very rare cases, can lead to life-threatening complications such as sepsis.

Heidi Plamping, 42, of Cochrane, Alberta, Canada, had been trying to calm down her cat, Storm, who scratched her face and arm as she clambered onto her head for safety
Heidi Plamping, 42, of Cochrane, Alberta, Canada, had been trying to calm down her cat, Storm, who scratched her face and arm as she clambered onto her head for safety

Ms Plamping's face swelled and became covered in a rash that worsened over the course of a few days. Pictured, on May 8, six days after being scratched

Ms. Plamping’s face swelled and became covered in a rash that worsened over the course of a few days.  Pictured, on May 8, six days after being scratched.

Ms Plamping had to go to hospital every day to receive a drip of antibiotics. Pictured on May 10

Ms. Plamping had to go to the hospital every day to receive a drip of antibiotics.  Pictured May 10.
As three-year-old Storm clambered onto Ms Plamping's her head for refuge, her claws caught Ms Plamping's skin ten times. Pictured, cuts to her face
As three-year-old Storm clambered onto Ms Plamping’s head for refuge, her claws caught Ms Plamping’s skin ten times.  Pictured, cuts to her face.

Ms Plamping, a digital marketing consultant who lives in Cochrane, Alberta, had travelled to British Columbia at the start of May with Storm to stay and work with friends for the summer.

When they arrived on May 2, Ms Plamping let Storm out on her lead as she had done countless times before when they’ve visited the unidentified friend.

However, since their last visit, Ms Plamping’s friend had got two Great Danes who were very friendly and excited to meet Storm.

The large dogs scared her and she started to get tangled in her lead as she panicked to get away.

Ms Plamping said: ‘Their dogs are very friendly, but my cat hasn’t met a dog before so when one of them showed up she freaked out.’

Ms Plamping rushed to Storm’s rescue and started to untangle her beloved cat as she climbed up her face to the safety of her head.

Ms Plamping said: ‘Eventually I picked her up so I could bring her inside. She was so scared she climbed my face to my head while I screamed murder and put her inside.’

As a result, Ms Plamping had seven scratches on her face and three more on her hand and arm.

When she woke up the next day with a black eye, Ms Plamping thought nothing more of her injuries.

But by May 5, Ms Plamping had a swollen hand and eyes. Due to having sensitive skin, she thought that she could possibly be having a reaction to any dust that could have been present in her new surroundings.

Storm, pictured, was freaked by a Great Dane dog at Ms Plamping's friend's houseStorm, pictured, was freaked by a Great Dane dog at Ms Plamping’s friend’s house

When Ms Plamping woke up the day after the scratches with a black eye (pictured), but didn't think much of her injuries
When Ms Plamping woke up the day after the scratches with a black eye (pictured), but didn’t think much of her injuries
But by May 5, Ms Plamping had a swollen hand and eyes (pictured). Due to having sensitive skin, she thought that she could possibly be having a reaction to dust mites
But by May 5, Ms Plamping had a swollen hand and eyes (pictured). Due to having sensitive skin, she thought that she could possibly be having a reaction to dust mites
On May 7, pictured, Ms Plamping's face was significantly more swollen and covered in rashes so she went back to the doctor she had seen the day before

On May 7, pictured, Ms Plamping’s face was significantly more swollen and covered in rashes so she went back to the doctor she had seen the day before

Ms Plamping said: 'When they had to order antibiotics that had to go into me through an IV, I knew it was serious'. Pictured, an IV line to administer the drugs

Ms Plamping said: ‘When they had to order antibiotics that had to go into me through an IV, I knew it was serious’. Pictured, an IV line to administer the drugs

She said: ‘I haven’t had a bad skin reaction in a long time but since high school I have had sensitive skin.

‘I have had rashes off and on all my life from dust, detergent, perfumes and dyes.’

The next day her symptoms were worse, and she went to a doctor where she was given pills and told to come back the next day if her condition deteriorated.

On May 7, Ms Plamping’s face was significantly more swollen and covered in rashes so she went back to the doctor who was shocked.

Ms Plamping said: ‘This time they were a bit freaked out by my face and informed me how bad cat scratches and bites can get. It can lead to sepsis and even death.’

Cats carry bacteria, one of which, called Bartonella henselae, can cause infection in a human when it is transmitted through a deep cut or bite.

About three to 14 days after the skin is broken, a mild infection can occur at the site of the injury, and then progress to become swollen, red and painful.

Known as ‘cat-scratch disease’, it can become fatal if not treated quickly. The CDC and NHS are quick to assure people that the dangerous cases are generally rare.

But other experts warn that cat bites and scratches can be ‘devastating in terms of infection and permanent disability’, if left untreated.

Official figures suggest around 12,000 Americans get cat scratch disease each year. It is unsure how many Britons develop the infection.

Ms Plamping, a digital marketing consultant, said it wasn't the first week in British Columbia she had been hoping for. Pictured, on May 13 when the swelling and rashes had almost gone

Ms Plamping, a digital marketing consultant, said it wasn’t the first week in British Columbia she had been hoping for. Pictured, on May 13 when the swelling and rashes had almost gone

Ms Plamping, pictured before the drama, said if she had to rescue Storm again, she would
Ms Plamping, pictured before the drama, said if she had to rescue Storm again, she would
Ms Plamping has had Storm ever since she was four months old and said that this incident hasn't changed their relationship. Pictured together
Ms Plamping has had Storm ever since she was four months old and said that this incident hasn’t changed their relationship. Pictured together 
Ms Plamping was put on an IV and had to return every day for four days to get a new dose of antibiotics administered.

She said: ‘They said it is common for cat scratches or bites to cause infection. When they had to order antibiotics that had to go into me through an IV, I knew it was serious but was just thankful that we were heading in the right direction to make me better.

‘The next day, the swelling was going down but a rash was spreading on my arm. 

‘The doctor outlined my arm where the rash was and told me to go to the emergency room if it spread any further that night. Thankfully it didn’t and once the hand swelling went down they finally gave me prednisone [a medication to calm the immune system] to help with the swelling and rash in my face.’

The medication made Ms Plamping nauseous and sleepy, and she said: ‘I started getting upset when my face was so tight and itchy.

‘I knew it would get better, but I was growing impatient. So, it wasn’t exactly the first week in British Columbia that I had pictured for myself.’

Following her ordeal, animal lover Ms Plamping said that Storm looked at her funny for a few days whilst the swelling went down.

But the two forgave each other instantly and Ms Plamping said she wouldn’t hesitate to rescue Storm again if the situation arose.

Ms Plamping has had Storm ever since she was four months old and said that this incident hasn’t changed their relationship, but Storm is now more wary of going outside.

‘Storm is very hesitant to leave the cabin. Back home in Alberta she freely goes outside. Here she is nervous about the dog,’ said Ms Plamping.

‘If I had to protect her again and pick her up, I would. I don’t have kids. She is my baby. My fur baby.

‘I wasn’t aware that cat scratches were so infectious. If you get a cat scratch or bite, go to your doctor right away.’

CAN YOU GET AN INFECTION FROM A CAT SCRATCH?

Cat-scratch disease (CSD) is a bacterial infection spread by cats. The disease spreads when an infected cat licks a person’s open wound, or bites or scratches a person hard enough to break the surface of the skin. 

About three to 14 days after the skin is broken, a mild infection can occur at the site of the scratch or bite.

The infected area may appear swollen and red with round, raised lesions and can have pus. The infection can feel warm or painful. A person with CSD may also have a fever, headache, poor appetite, and exhaustion.

Later, the person’s lymph nodes closest to the original scratch or bite can become swollen, tender, or painful.

CSD is caused by a bacterium called Bartonella henselae. About 40% of cats carry B. henselae at some time in their lives, and it is more common in kittens. 

Although rare, CSD can cause people to have serious complications. CSD can affect the brain, eyes, heart, or other internal organs.

These rare complications, which may require intensive treatment, are more likely to occur in children younger than five years and people with weakened immune systems.

WHAT SHOULD YOU DO IF YOU’RE BITTEN BY AN ANIMAL? 

  • Clean the wound immediately by running warm tap water over it for a couple of minutes, even if the skin does not appear broken.
  • Remove any dirt or foreign objects from the wound.
  • Encourage the wound to bleed slightly by gentle squeezing (unless already bleeding freely).
  • If there is heavy bleeding, place a clean pad or sterile dressing over wound and apply pressure.
  • Dry the wound and cover with a clean dressing or plaster.
  • Seek medical advice unless the wound is very minor.
  • For severe wounds, go to A&E. 

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**Comment**

Bartonella with cat scratch and fairly immediate & severe symptoms, while scary, is fairly straight forward.  Bartonella, without cat exposure that smolders over years, along with potential tick bites and other pathogen involvement can be devastating, fly under the radar, and remain undiagnosed for years.  This is what many Lyme/MSIDS patients struggle with.  

For more:  https://madisonarealymesupportgroup.com/2018/05/07/fox-news-bartonella-is-the-new-lyme-disease/

https://madisonarealymesupportgroup.com/2019/03/24/cat-scratch-disease-caused-teens-schizophrenia-like-symptoms-report-says/

https://madisonarealymesupportgroup.com/2019/03/02/skin-inflammation-nodules-letting-the-cat-out-of-the-bag/  Cases of Bartonella with NO cat exposure listed in comment section.

https://madisonarealymesupportgroup.com/2019/04/24/human-bartonellosis-an-underappreciated-public-health-problem/

https://madisonarealymesupportgroup.com/2019/05/09/bartonella-transmitted-to-children-at-birth-causing-chronic-infections/

More about Bartonella & Treatments: https://madisonarealymesupportgroup.com/2016/01/03/bartonella-treatment/

https://madisonarealymesupportgroup.com/2019/05/05/good-news-for-bartonella-patients-identification-of-fda-approved-drugs-with-higher-activity-than-current-front-line-drugs/

Pets can also bring ticks into the house to infect you:  https://madisonarealymesupportgroup.com/2017/08/12/pet-owners-have-nearly-2-times-the-risk-of-finding-ticks/

 https://madisonarealymesupportgroup.com/2019/01/29/woman-links-lyme-disease-diagnosis-to-pet-cat-sleeping-in-bed/

https://madisonarealymesupportgroup.com/2019/05/28/septic-shock-caused-by-rmsf-in-suburban-texas-patient-with-pet-dog-exposure-a-case-report/

https://madisonarealymesupportgroup.com/2018/09/20/tick-infestations-of-wildlife-companion-animals-in-ontario-canada-with-detection-of-human-pathogens-in-ixodes-scapularis-ticks/

https://madisonarealymesupportgroup.com/2019/04/16/april-lyme-prevention-month-for-dogs-a-pet-owners-guide/

https://madisonarealymesupportgroup.com/2019/05/14/tick-population-soaring-as-local-vets-see-lyme-disease-cases-in-dogs-quadruple/

https://madisonarealymesupportgroup.com/2018/10/02/fda-flea-tick-meds-for-pets-causing-seizures-neurological-issues/

If you are currently treating your fur baby with Bravecto, Nexgard or Simparica you need to be careful. According to the FDA, some animals treated with these medications

“have experienced adverse events such as muscle tremors, ataxia, and seizure.”1 There is also another product in that class of drugs called, Credelio (it recently received FDA approval).

Category:

Activism, Bartonella, Inflammation, Treatment

Treatment & Prognosis of Lyme Disease – John Hopkins

https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/

Treatment and Prognosis of Lyme Disease

What is the treatment for Lyme disease?

The first-line standard of care treatment for adults with Lyme disease is doxycycline, a tetracycline antibiotic. Other antibiotics that have activity against borrelia include the penicillin-like antibiotic, amoxicillin, and the cephalosporin, Ceftin. The mainstay of treatment is with oral (pill) antibiotics, but intravenous antibiotics are sometimes indicated for more difficult to treat cases such as meningitis, late Lyme arthritis, or neurologic-Lyme disease.

Why are antibiotics the first line of treatment for Lyme disease?

The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme bacteria can more easily evade the host immune system and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria (doxycycline) or disrupt the cell wall of the bacteria and kill the bacteria (penicillins). By stopping the growth or killing the bacteria the human host immune response is given a leg up to eradicate the residual infection. Without antibiotics, the infection in Lyme disease can more readily persist and disseminate.

What are the side effects of Lyme disease treatments?

Antibiotics, like all medications, have the potential for side effects. Any antibiotic can cause skin rashes, and if an itchy red rash develops while on antibiotics, a patient should see their physician. Sometimes symptoms worsen for the first few days on an antibiotic. This is called a Herxheimer reaction and occurs when the antibiotics start to kill the bacteria. In the first 24 to 48 hours, these dead bacteria stimulate the immune system to release inflammatory cytokines and chemokines that can cause increased fever and achiness. This should be transient and last no more than a day or two after the initiation of antibiotics.

The most common side effect of the penicillin antibiotics is diarrhea, and occasionally even serious cases caused by the bacteria Clostridium difficile. This bacterial overgrowth condition occurs because antibiotics kill the good bacteria in our gut. It can be helpful to use probiotics to restore the good bacteria and microbiome balance.

Prognosis

The prognosis after early treatment of Lyme disease is generally very good. The prognosis worsens, however, when diagnosis and treatment are delayed.

Most patients with early Lyme disease infection recover with antibiotics and return to their normal state of health. However, some patients suffer from chronic symptoms related to Lyme disease despite standard of care antibiotic therapy. For research studies, a defined subset of this condition is called Post Treatment Lyme Disease Syndrome (PTLDS).

What is Post Treatment Lyme Disease Syndrome?

Symptoms of Post Treatment Lyme Disease

  • Include severe fatigue, musculoskeletal pain, & cognitive problems
  • Can significantly impact patients’ health and quality of life
  • Can be debilitating and prolonged

Post Treatment Lyme Disease Syndrome (PTLDS) represents a subset of patients who remain significantly ill 6 months or more following standard antibiotic therapy for Lyme disease. PTLDS is characterized by a constellation of symptoms that includes severe fatigue, musculoskeletal pain, sleep disturbance, depression, and cognitive problems such as difficulty with short-term memory, speed of thinking, or multi-tasking. In the absence of a direct diagnostic biomarker, PTLDS has been difficult to diagnose by physicians, and its existence has been controversial. However, our clinical research shows that meticulous patient evaluation when used alongside appropriate diagnostic testing can reliably identify patients with typical symptom patterns of PTLDS.

Our research indicates the chronic symptom burden related to PTLDS is significant. Although often invisible to others, the negative impact on quality of life and daily functioning is substantial for PTLDS sufferers.

In our study, participants with Post Treatment Lyme Disease Syndrome (PTLDS) & controls were asked about presence and severity of 36 signs/symptoms over the past 2 weeks. Displayed are the 25 signs/symptoms with a statistically significant difference in severity by group (P<0.05) ordered by frequency within the PTLDS group. The nine signs/symptoms with a statistically significant difference at the p<0.001 level are indicated with an asterisk*.

The chronic symptom burden related to Lyme disease is considerable, as shown on the left side of the graph above, and statistically significantly greater than the aches and pains of daily living experienced by the control group, on the right.

What are the risk factors for Post Treatment Lyme Disease Syndrome?

Risk factors for Post Treatment Lyme Disease Syndrome include:

  • Delay in diagnosis
  • Increased severity of initial illness
  • Presence of neurologic symptoms

Increased severity of initial illness, the presence of neurologic symptoms, and initial misdiagnosis increase the risk of Post Treatment Lyme Disease Syndrome. PTLDS is especially common in people that have had neurologic involvement. The rates of Post Treatment Lyme Disease Syndrome after neurologic involvement may be as high as 20% or even higher. Other risk factors being investigated are genetic predispositions and immunologic variables.

In addition to Borrelia burgdorferi, the bacteria that causes Lyme disease, there are several other tick-borne co-infections that can also contribute to more prolonged and complicated illness.

What causes Post Treatment Lyme Disease Syndrome?

The causes of PTLDS are not yet well understood but our Center is investigating the potential roles of:

  • Infection-induced immune dysfunction or auto-immunity
  • Inflammation
  • Persistent bacterial infection or bacterial debris
  • Neural network alteration
  • Other tick-borne infections
  • Other biologic mechanisms of disease

Our research has validated PTLDS as a serious and impairing condition. However, the causes of PTLDS are not yet well understood or validated, and the term PTLDS does not mean post-infection or imply an assumption of underlying biologic mechanisms. The roles of immune dysfunction, autoimmunity, persistent bacterial infection, neural network alteration, and other potential causative biologic mechanisms of PTLDS are being investigated at our Center.

Research at our Center aims to understand the biologic drivers of all manifestations of Lyme disease so that diagnostics can be improved, and more effective treatments developed to enhance patients’ health outcomes.

Is there a cure for Post Treatment Lyme Disease Syndrome?

Currently there are no FDA approved treatments for Post Treatment Lyme Disease Syndrome. Therefore, treatments must be individualized by addressing specific symptoms and circumstances for each individual.

Late Lyme Arthritis

What is the prognosis for Late Lyme Arthritis?

Following antibiotic therapy, approximately 90% of late Lyme arthritis patients recover from extensive joint swelling, arthritis, and pain.

What happens if a patient doesn’t recover from Late Lyme Arthritis?

After extensive antibiotic treatment, approximately 10% of late Lyme arthritis patients remain symptomatic with a condition termed antibiotic refractory late Lyme arthritis. Extensive research has shown that the bacteria can no longer be found in the tissue or fluid of this subgroup of patients. Their continued swelling of the joints and pain is thought to be perpetuated by their own immune system’s autoimmune condition. Their autoimmunity continues to inflame the tissues and cause swelling and pain even in the absence of detectable bacteria.

Why are patients often referred to the Center?

Patients are often referred to the Lyme Disease Research Center for evaluation of chronic Lyme disease, an umbrella term that encompasses many different subsets of illness. Examples of defined Lyme disease subsets are Post Treatment Lyme Disease Syndrome (PTLDS), and Antibiotic Refractory Late Lyme Arthritis. The mechanisms of these Lyme disease conditions are different and effective treatments need to be tailored accordingly.

The symptoms of chronic Lyme disease are similar to and overlap with other conditions involving fatigue, pain, and cognitive symptoms. Therefore, rigorous diagnostic evaluation is necessary to determine if Lyme disease could be the trigger for ongoing disease processes or if some other disease processes are involved.

By distinguishing subsets of Lyme disease, such as PTLDS, our research program is illuminating the pathophysiology of the illness to improve diagnostics, treatments, and quality of life for patients.

USE OF THIS SITE

All information contained within the Johns Hopkins Lyme Disease Research Center website is intended for educational purposes only. Physicians and other health care professionals are encouraged to consult other sources and confirm the information contained within this site. Consumers should never disregard medical advice or delay in seeking it because of something they may have read on this website.

___________________

**Comment**

Overall, a balanced and accurate article.  A few points for consideration:

  1. There have been treatment failures from the beginning using the mono-therapy of doxycycline.  This tactic needs rethinking for numerous reasons: pleomorphism (the shapeshifting ability of borrelia), and polymicrobialism (other pathogen involvement).  https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
  2. I like how the author states that, “for research purposes a defined subset of this condition is called Post Treatment Lyme Disease Syndrome (PTLDS).” What’s  important to understand is that this defined subset only includes patients who are diagnosed and treated early who go on to develop persistent symptoms. It does not and should not include those who were undiagnosed and untreated for months to years, which one microbiologist states is 30-40%.  By adding the two groups, a whopping 60% go onto develop chronic symptoms. To date, researches are utilizing the falsely skewed 10-20% which isn’t based in reality:  https://madisonarealymesupportgroup.com/2019/02/25/medical-stalemate-what-causes-continuing-symptoms-after-lyme-treatment/  This important fact indicates the pressing importance of this neglected group that nobody is noticing.
  3. Please note that the top reason for patients to develop PTLDS is delayed diagnosis, yet the CDC/IDSA keep pushing their worthless tests and taking a “wait and see” approach.  This tactic hasn’t worked for over 40 years yet they continue to blindly recommend this. It’s laughable if it wasn’t so serious.
  4. There are far more patients with neurological involvement than mainstream medicine has a clue of.
  5. I’m thankful the author states that one reason for PTLDS could be persistent bacterial infection or bacterial debris.  Mainstream medicine and authorities STILL are not acknowledging this. I’m also thankful they state that PTLDS is a serious and impairing condition. Now, they need to acknowledge that 60% or more suffer with this, with corresponding prioritized research reflecting the vast numbers.
  6. The authors state that there are, “no FDA approved treatments for Post Treatment Lyme Disease Syndrome; therefore, treatments must be individualized by addressing specific symptoms and circumstances for each individual.”  Since this is true, why are Lyme doctors STILL being persecuted for treating people individually and outside the CDC guidelines of 21 days of doxycycline and why won’t insurance cover it? Case in point:  https://madisonarealymesupportgroup.com/2017/06/24/llmd-daniel-cameron-disciplined-by-ny-medical-authorities/  Within this article is another article in “Sciencebasedmedicine.org,” that states, “Chronic Lyme” VIP Daniel Cameron Discipled by New York Medical Authorities. The title alone should be a foreshadowing of the type of ad hominem attacks against Lyme literate doctors for decades. Expert: “He is not a “recognized leader” among board-certified infectious diseases doctors and other experts who agree that “chronic Lyme” is not a real disease and who rely on well-conducted trials showing that long-term antibiotics do not substantially improve the outcome for patients diagnosed with so-called “chronic Lyme.” Long-term antibiotics can, in fact, result in serious harm, including death, a subject our good friend Orac covered just yesterday over on Respectful Insolence. The CDC, the Infectious Diseases Society of America (IDSA), the American Academy of Pediatrics, the American College of Physicians, the Medical Letter and the American Academy of Neurology all reject the notion that “chronic Lyme” exists and that long-term antibiotics are an appropriate treatment. (Orac’s post nicely summarizes the differences between real Lyme disease and “chronic Lyme,” “a prototypical fake medical diagnosis,” and the dangers of long-term antibiotics, as have posts on SBM, here, here, here, and here.)”  
  7. Malicious articles such as the one above which strangely chastises Cameron for not being a “recognized leader” which means part of the “Good old boy club,” among infectious disease doctors is a bit ironic when you consider that due to serious medical abuse, patients have been FORCED to go to doctors willing to listen to them to perhaps learn something new.  The “well conducted” clinical trials don’t exist.  There’s serious flaws with each of them.  And people HAVE improved immensely using long-term antibiotics.  Case in point:  https://madisonarealymesupportgroup.com/2017/07/09/idsa-founder-used-potent-iv-antibiotics-for-chronic-lyme/  Excerpt: A founding member of the IDSA, Dr. Waisbren disagreed with their stance that Lyme is hard to get and easy to treat, is not persistent, and that IV antibiotics are too dangerous to use as a treatment option.  In his book, “Treatment of Chronic Lyme Disease,” he discusses 51 difficult cases, nearly all Chronic Lyme disease sufferers that had been misdiagnosed with everything from ALS to mental disorders. They had all been neglected by main stream medicine that was following the CDC/IDSA stringent guidelines of essentially 21 days of doxycycline.  BTW:  Waisbren’s book was written nearly a decade ago yet the IDSA/CDC infectious disease “leaders” haven’t learned a thing and continue to live in the Stone Ages.

 

 

 

 

 

Category:

Inflammation, Lyme, research, Treatment

Valneva’s Lyme Disease Vaccine on FDA Fast Track Designation

https://www.change.org/p/the-us-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf/u/24581258?

Valneva’s Lyme disease vaccine on FDA Fast Track Designation

MAY 19, 2019 — 

The letter below was sent to The New Hampshire Medical Society which is the committee given responsibly for further study of New Hampshire House Bill 490.

House Bill 490
https://legiscan.com/NH/text/HB490/id/1962817

Please forward this email to as many contacts that you may have in order to inform the public of the truth behind the mishandling of Lyme disease here in the United States. Lyme patients worldwide have been affected as foreign public health agencies are blindly following what has been deceitfully established here in the US.

Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861

WAKE UP AMERICA!

——— Original Message ———-
From: CARL TUTTLE <runagain@comcast.net>
To: james.potter@nhms.org, michael.padmore@nhms.org
Cc: Howard.Moffett@leg.state.nh.us, amknh78@gmail.com, Tom.Sherman@leg.state.nh.us, Martha.FullerClark@leg.state.nh.us, Jeb.Bradley@leg.state.nh.us, James.Gray@leg.state.nh.us, Shannon.Chandley@leg.state.nh.us, Doug.Marino@leg.state.nh.us, kathie@kathiefife.com, Polly.Campion@leg.state.nh.us, jc.salloway@unh.edu, wmarshmd@gmail.com, nhbidc@dhhs.nh.gov, saunderson.george@gmail.com, electdavidkarrick@gmail.com, cmcmahon55@gmail.com, jeffrey.meyers@dhhs.nh.gov, cutler_library@comcast.net, brett.giroir@hhs.gov, tickbornedisease@hhs.gov, abigail.mathewson@dhhs.nh.gov
Date: May 18, 2019 at 8:41 AM
Subject: Valneva’s Lyme disease vaccine on FDA Fast Track Designation

To: The New Hampshire Medical Society Advisory Council on Tick and Other Insect Borne Diseases,

Please take a moment to read the following Facebook message I received yesterday regarding a personal experience after receiving the LYMErix vaccine previously FDA approved in 1998.

Contrary to public belief, LYMErix was not pulled from the market in 2002 solely due to low demand. More on that in a moment…….

Beth Leahy
https://www.facebook.com/beth.leahy.77

Hi Carl i have a question. Ty for all your hard work btw. i had the 3 lymerix vaccines in 2000-2001. i am 43 years old and was forced to retire 3 years ago. i have neuro chronic lyme. I have reached out to several forums and organizations asking if anyone would be willing to do any testing on me for free. the benefit to this is i have a twin sister who did not receive the vaccines and has never been bitten. she has agreed to undergo comparative testing with me whether its gene testing or any other testing. we are willing to do anything. Thankfully she is willing to do whatever it is to help me and others. Maybe bc of our unique situation we could help in doing something positive. I have received no response from anyone. i am disappointed because i think its a unique opportunity at least no harm in trying. Can u please ask some of your resources if they are interested? I live near Albany NY but we will travel anywhere. Thank you. my phone # is 518-XXX-XXXX and my name is Beth Leahy. Thank you in advance!! I hope with all your contacts maybe you will have better luck in finding a researcher or dr. who will be interested.

____________________________________

In reference to Beth Leahy’s experience above, please see the following excerpt from the attached REPORT ON LYMErix prepared for the 2001 Advisary Committee Meeting:

Sheller Lymerix
https://www.dropbox.com/s/sodqs3pdeeesktf/Sheller%20Lymerix.pdf?dl=0

“The people who have contacted us were, prior to vaccination with LYMErix, healthy, active and energetic. Indeed, the very reason they sought the LYMErix vaccine was their desire to preserve their healthy, active lifestyle. However, what they experienced was a dramatic degradation of their health and quality of life. As will be described below, these previously healthy individuals are now afflicted with painful, at times debilitating arthritic symptoms, including joint pain and swelling, as well as extremely severe Lyme-disease-like symptoms which have persisted to this day.”

Below is the link to the Final Judgement and Approval of the class action against SmithKline Beecham as a settlement was awarded to these individuals.

JUDGEMENT, FINAL ORDER AND DECREE GRANTING FINAL APPROVAL OF THE CLASS ACTION SETTLEMENT:

https://www.dropbox.com/s/v3gyw4fv8nst9bz/2003_Vaccine_Judgement_Final_Sttle_Apprvl..pdf?dl=0

In addition please see the following study reporting adverse neurological complications:

Int J Risk Saf Med. 2011;23(2):89-96. doi: 10.3233/JRS-2011-0527.

Neurological complications of vaccination with outer surface protein A (OspA).

Marks DH1. http://www.ncbi.nlm.nih.gov/pubmed/21673416

Abstract

A wide range of neurological complications have been reported via the medical literature and the VAERS system after vaccination with recombinant outer surface protein A (OspA) of Borrelia. To explore this issue, 24 patients reporting neurological adverse events (AE) after vaccination with Lymerix, out of a group of 94 patients reporting adverse events after Lymerix vaccination, were examined for causation. Five reports of cerebral ischemia, two transient Ischemic attacks, five demyelinating events, two optic neuritis, two reports of transverse myelitis, and one non-specific demyelinating condition are evaluated in this paper. Caution is raised on not actively looking for neurologic AE, and for not considering causation when the incidence rate is too low to raise a calculable difference to natural occurence.

_________________________________

To: The New Hampshire Medical Society Advisory Council on Tick and Other Insect Borne Diseases,

To my knowledge there was no follow-up research to determine why this class of patient suffered the reaction they experienced. Is there a genetic predisposition that could give a similar reaction to the next OspA vaccine?

Valneva’s Lyme disease vaccine now on FDA Fast Track Designation is yet another OspA vaccine.

TOUCHED BY LYME: Why we care so strongly about a potential vaccine
https://www.lymedisease.org/touchedbylyme-why-we-care-lyme-vaccine/

_________________________________

It is believed that Lyme disease was pigeonholed into its current status by the two principal investigators of the previous Lyme disease vaccines as these investigators conceptualized a disease that would enable vaccine development.

A preventive vaccine for Lyme disease would not satisfy the FDA if a chronic persistent infection and seronegative disease exist. The lead author of the one-size-fits-all IDSA Lyme treatment guideline (which matches the conceptualized disease) was the principal investigator of Connaught’s Lyme vaccine, Dr. Gary Wormser. This is a flagrant conflict of interest. Have we been dealing with an antibiotic resistant/tolerant superbug purposely concealed to promote vaccine development?

When the LYMErix vaccine was pulled from the market the deception had to continue and this is why all the science identifying persistent infection must be ignored.

There are published studies early on describing the destructive nature of borrelia (1988 Paul Duray paper coauthored by Allen Steere, See attached PDF) so Steere and Wormser (Principal investigators of the previous Lyme vaccines) know everything the disabled Lyme community is experiencing. The rush to create a vaccine should have been the tip-off as it was going to be the “cure-all” for an incurable/disabling disease.

Paul Duray paper:

https://www.dropbox.com/s/gjl0cym2mr2phij/1988-clinical-pathologic-correlations-of-lyme-disease-by-stage-Duray.pdf?dl=0

Leaving the CDC in control of Lyme disease under the watch of Health and Human Services will allow this public health crisis to continue.

Anyone who does not see this is turning a blind eye to an immoral act.

Respectfully submitted,

Carl Tuttle

Lyme Endemic Hudson, NH

“Justice will not be served until those who are unaffected are as outraged as those who are.” ― Benjamin Franklin

____________________

For more:  https://madisonarealymesupportgroup.com/2018/01/28/the-secret-x-files-the-untold-history-of-the-lymerix-vaccine/

https://madisonarealymesupportgroup.com/2018/07/22/why-we-care-so-strongly-about-a-potential-lyme-vaccine/

https://madisonarealymesupportgroup.com/2018/07/01/lyme-vaccine-fail-safety-ignored/

https://madisonarealymesupportgroup.com/2018/06/07/the-lyme-vaccine-russian-roulette/%20https://

https://madisonarealymesupportgroup.com/2017/07/01/pbs-lyme-vaccine/

Category:

Activism, Inflammation, Lyme, Lyme Vaccine