Archive for the ‘Inflammation’ Category

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/

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 

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 had to go to hospital every day to receive a drip of antibiotics. Pictured on 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

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).

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.

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**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.

 

 

 

 

 

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/

This Little-Known Bacterium Could Be the Infectious Cause of Crohn’s Disease – And It Can Be Treated

https://www.linkedin.com/pulse/little-known-bacterium-could-infectious-cause-crohns-can-jill-c-/

This Little-Known Bacterium Could Be The Infectious Cause of Crohn’s Disease – And It Can Be Treated

Jill C. Carnahan, MD

If you or a loved one has suffered from Crohn’s disease, you may have been told that the exact cause of your misery is still unknown. They might have told you there are many possible causes for Crohn’s disease – age, ethnicity, family history, immunodeficiency, history of NSAIDs use, etc. Dealing with the symptoms of Crohn’s disease is hard enough. But trying to understand why you are suffering is frustrating when you don’t even know what’s causing it.

For decades, patients were just told to accept the fact that there is no known cause for Crohn’s disease. To rub salt into the wound, there was – and still is – no cure or one treatment that worked consistently for everyone with Crohn’s disease.

But recent research is challenging these long-held beliefs. There is growing evidence that Crohn’s disease could have an infectious cause, which I wrote about in my article, 3 Surprising Microbial Triggers of Crohn’s Disease.

There is one particular microbe that is gaining more and more attention – Mycobacterium avium subspecies Paratuberculosis, better known as MAP. And a MAP infection may be treatable.

What is Mycobacterium avium subspecies Paratuberculosis?

Mycobacterium avium subspecies Paratuberculosis (MAP) is a bacterium belonging to a family of bacteria called Mycobacteriaceae. Does “Paratuberculosis” make you think of any diseases you might be familiar with? If you answered tuberculosis, you’d be correct. MAP is in the same family as the bacteria that cause tuberculosis (Mycobacterium tuberculosis).

MAP is also the cause of Johne’s disease, a systemic infection and chronic inflammation in the intestine of animals, but most commonly in domestic livestock. Johne’s disease sounds a bit like Crohn’s disease, doesn’t it? They share more similarities than their names, though. Both Crohn’s disease and Johne’s disease are forms of Inflammatory Bowel Disease (IBD), and as such, they share some clinical and pathological features (although their similarity has been overstated). Some of their similarities include:

  • Chronic diarrhea
  • Dull hair
  • Weight loss
  • Cycle of remission and relapse
  • Occasional granulomatous appearance
  • Growth of lesions in:
  • Esophagus and oral cavity
  • Ileum and colon
  • Mesenteric lymph nodes
  • Rectum, anul

In fact, these similarities are how scientists came to suspect MAP as an infectious cause of Crohn’s disease. So, is it just a coincidence that these two diseases share features, or could they share a common cause, too?

To answer this question, let’s look at how humans are exposed to MAP.

How Are Humans Exposed to MAP?

In ruminants like cows, MAP is transmitted primarily via the fecal-oral route. Most calves are infected within their first month of life. The infection is followed by a long symptom-free period of 3 to 5 years, and only 10% to 15% of calves develop fatal clinical disease. The critical point to make here is that animals infected with MAP can shed the bacteria in their stools, even during the latency period.

It has been estimated that between  68% to  91% of U.S. dairy herds are infected with MAP (although most will not show any symptoms of infection).

And this spells serious trouble for humans.

MAP, along with feces, is deposited onto pastures, where rain can wash it into nearby water sources. In fact, MAP DNA was detected in over 80% of domestic water samples in Ohio! And MAP is one tough bug – studies have found that MAP can survive chlorine disinfection treatment used in drinking water systems.

Other animals, including rabbits and wild ruminants like deer, can also be infected secondarily and shed MAP into the environment. Once shed, MAP can live in the environment for between 12 weeks and a year in soil or water, giving you plenty of opportunity to become infected.

But it doesn’t stop there. MAP can also contaminate our food supply, especially dairy and meat products. Pasteurization can significantly reduce the risk of contamination, but does not eliminate it due to the thick lipid cell wall of MAP that allows it to survive the process. In one study, up to 25% of pasteurized cow’s’ milk tested positive for live MAP during peak periods.

Such a widespread environmental prevalence of MAP can only mean one thing: humans are chronically exposed to MAP. But why does it affect some people more than others? Let’s discuss that next.

Why do Only Some People Exposed to MAP Get Crohn’s Disease?

If so many people are exposed to MAP, wouldn’t there be more people with Crohn’s disease? And why isn’t there an epidemic of MAP infection among dairy farmers?

There are a variety of factors that influence whether an individual develops Crohn’s disease or another disease (like ulcerative colitis) caused by MAP. And not everyone infected by MAP develops a disease caused by the bacterium. Let’s look at a few factors that can determine whether an individual develops a disease when infected with MAP:

  • The dose of MAP to which the person is exposed & frequency of exposure: In susceptible individuals, a significant number of MAP can build up over time. High levels of MAP are likely to cause Crohn’s disease.
  • The route of infection: Routes of infection that increase the concentration of MAP increase the risk of Crohn’s disease. Examples of such routes include aerosolized water from contaminated rivers and hyperosmolar milk.
  • Age of individual infected: It takes less MAP to cause Crohn’s disease in a child than it does in an adult.
  • Genetic and acquired susceptibility: Certain genes control how intracellular bacteria are processed in the body, and these seem to have a slight effect on the risk of developing Crohn’s disease. Also, individuals with a history of illness may not be able to handle MAP in the way that health people do. In other words, in a health person, macrophages eat and digest MAP, and T-cells eradicate any cells that contain MAP. When these processes do not occur for whatever reason, a person can develop Crohn’s disease.
  • Sex: Infant males and adult females tend to develop Crohn’s disease more often when infected with MAP.

The Two Forms of MAP

Paradoxically, children who come into contact with farm animals are less likely to develop juvenile Crohn’s disease. Part of the reason is that occupational exposure to the bacterium increases the antibody levels. But there’s more to the answer – MAP exists (and can switch between) in two forms:

  1. ZN-positive phenotype (physical characteristics): Mycobacteria are acid-fast organisms, meaning they have cell walls that enables them to be resistant to acid-based decolorization used in many bacteria staining procedures. These organisms need to be stained by a process called Ziehl-Neelsen (ZN) staining and are thus said to have an “encapsulated” or ZN-positive phenotype. It is this phenotype of MAP that can live outside of other cells and is excreted by infected animals. However, humans are not susceptible to it, and may even acquire natural immunity to disease as a result of the exposure.
  2. ZN-negative phenotype: When MAP is taken up into a host’s white blood cells, MAP sheds its “capsule.” This “naked” from is called a ZN-negative phenotype, which means the gold standard ZN staining cannot be used to detect it. Even without its “capsule,” MAP is extremely tough and can resist many chemical and enzymatic efforts to break it down. It is also much more virulent to humans and is the form found in most people with Crohn’s disease.

How to Test for MAP

This is where already frustrated patients run into more doors – standard methods for detection of MAP, such as ELISA assays, have notoriously low sensitivity and specificity, which makes them unreliable. As discussed above, the ZN-negative phenotype found in most Crohn’s disease patients renders traditional bacteria staining tests useless.

To add to these difficulties, ordinary microscopes can’t see MAP. Fecal cultures can identify the presence of the bacterium, but MAP grows very slowly – it can take 3 months or more just for colonies to appear on a bacterial culture dish.

Some studies have used molecular techniques such as polymerase chain reaction (PCR) to overcome these challenges. However, the availability of such tests is extremely limited for many patients.

But there is another way. Otakaro Pathways, a New Zealand-based company, has developed a highly reliable test for the detection of MAP, and the kit is available to patients. All you need to do is send a sample of your blood, and the results will be delivered to you by e-mail in 30 days. Essentially, this test acts as a biomarker (a measurable indicator) to support the diagnosis of Crohn’s disease or other autoimmune diseases.

Can MAP Infections Be Treated?

The goal of traditional Crohn’s disease treatment is to reduce the inflammation that triggers the symptoms and to limit complications. A treatment plan for Crohn’s disease can include various agents, such as:

  • Anti-inflammatory drugs (ex: corticosteroids, oral 5-aminosalicylates)
  • Immune system suppressors
  • Antibiotics
  • Pain relievers
  • Iron supplements
  • Anti-diarrheal
  • Vitamin B-12, calcium, and/or vitamin D supplements
  • Nutrition therapy
  • Surgery
Unfortunately, therapy for Crohn’s disease is imperfect, and relapses are common even after surgery.

And there’s another issue with the conventional treatment: It doesn’t treat the cause of Crohn’s disease. For patients with active MAP infections, unless the MAP is treated, doctors are only addressing the mechanism of the disease.

How Do You Treat a MAP Infection?

MAP is a member of the M. avium complex (MAC), a group of atypical bacteria that is notoriously difficult to treat with the traditional antimicrobial drugs. In a 5-year study, treatment of patients with Crohn’s disease using anti-tuberculosis drugs (isoniazid, ethambutol, and rifampicin) failed to demonstrate consistent improvement.

There are, however, some evidence to suggest that MAP-specific treatments can result in at least a partial remission of Crohn’s disease. The current therapy includes a combination of antimicrobials that have demonstrated impressive activity against mycobacterial species:

  • Rifabutin (RIF)
  • Clarithromycin (CLA)
  • Clofazimine (CLO)

This combination therapy has been tested in several clinical trials, which have reported clinical remission rates ranging from 44% to almost 90%.

The Landmark Study

The “landmark study” among anti-MAP clinical trials is considered to be that conducted by Selby et al. in 2007. This was a two-year, phase 3, parallel-group, placebo-controlled, double-blind trial designed to assess the combination therapy of a steroid and CLA, CLO, and RIF in 213 patients with active Crohn’s disease.

Although remission was induced within the first 16 weeks for 66% of patients receiving the antibiotic therapy, there was no evidence for a long-term benefit. This was a huge blow. For many, this failure was considered to be the “final nail in the coffin” for the MAP/Crohn’s hypothesis.

However, there were many weaknesses in the trial’s design and analysis. For example, the investigators did not test patients to confirm a MAP infection before the start of the trial and did not use the optimal therapeutic doses for the three antibiotics used. Had the investigators included only patients with a MAP infection in the study, the benefits would likely have been more substantial.

In fact, when the results were re-analyzed using an “intent-to-treat” analysis, the combination of the 3 antibiotics and steroids performed significantly better than the placebo. In contrast to Selby et al.’s report that benefits peaked at 16 weeks and declined afterwards, the authors of the reanalysis observed that the benefits continued through week 104.

What does all of this mean? It simply means that the largest anti-MAP clinical trial was unreliable and therefore, it holds little significance. It also revealed the desperate need for a well-designed clinical trial for anti-MAP therapy.

And we didn’t get this trial for a long time – until very recently.

RHB-104 – A Groundbreaking Therapy for Crohn’s Disease?

Based on the increasing evidence supporting the MAP/Crohn’s disease hypothesis, RedHill Biopharma developed RHB-104, a novel formulation that combines CLA, CLO, and RIF in a single pill at lower dosages.

The low dose of each antibiotic was an important factor in developing RHB-104. Data from pre-clinical trials showed that at combined low doses, the three antibiotics exerted a synergistic antibacterial activity against MAP, an effect that was not seen when they were tested individually or in pairs. This simply means that when the three antibiotics are combined at low doses, their effect is greater than a higher dose of an individual antibiotic.

The lower concentrations were beneficial in other ways as well, including a more tolerable dose regimen and a decreased risk for bacterial resistance.

Following these encouraging preclinical trial results, RHB-104 was tested in a multicenter, randomized, double-blind, placebo-controlled, parallel group phase III trial involving about 331 patients with moderate to severe active Crohn’s disease. Patients were divided into two treatment groups as follows:

  • Patients receiving 5 RHB-104 capsules orally twice daily (95 mg CLA, 45 mg RIF, and 10 mg CLO)
  • Patients receiving 5 placebo capsules orally twice daily

Patients took the medication or placebo for 26 weeks and were monitored for an additional 26 weeks for a total of 52 weeks. At weeks 16, 26, and 52, the investigators evaluated patients for clinical remission, defined as a value less than 150 on the Crohn’s Disease Active Index (CDAI). Each time, RHB-104 demonstrated clear superiority over the placebo. At the one-year mark of the study, 25% of the anti-MAP recipients and 12% of the placebo recipients were in clinical remission.

More information about this phase III MAP trial can be found at clinicaltrials.gov.

The Fight Against MAP – A Success Story

I had the privilege of working with a young female patient in her 20s. She had been diagnosed with rheumatoid arthritis and Crohn’s disease, but was having a hard time finding relief from her chronic, severe pain. On a scale from 1 to 10 (with 10 being excruciating pain), her pain was about at 8 – she was in agony all the time.

From my experience, I’ve learned to consider the possibility of an infection whenever a patient is suffering from significant pain. First, I did the typical Crohn’s disease workup – the stool sample, the blood tests to check for deficiencies and infection, etc. We also sent a blood sample to Otakaro Pathways, and results showed she indeed had a MAP infection.

With this information, we began treatment with two antibiotics. As mentioned previously, a MAP infection is normally treated with a combination therapy of 3 antibiotics. In this case, however, I only used two antibiotics because the patient could not tolerate a third.

Within 30 to 60 days, the patient was pain-free and symptom-free – it was an incredible, dramatic turnaround! I had her continue taking the antibiotics for 9 months. The patient did well for about 6 months after stopping the therapy, but recently experienced a small relapse due to the high stress of wedding planning. We decided to put her back on a short-term antibiotic therapy, and I am happy to report that she is doing very well.

I firmly believe that the patient would have stayed in remission had it not been for the stress of wedding planning.

Now, I know many of you are probably shocked. What in the world could I be thinking putting a patient on a 9-month course of antibiotics? And you’re right. Typically, I am not a fan of antibiotics. When used excessively and irresponsibly, antibiotics can do irreversible damage to your gut microbiome.

However, in cases such as this where a patient is suffering from chronic illnesses that would otherwise have no cure, antibiotics can have a life-changing and curative effect. Of course, I carefully monitor my patients during long courses of antibiotics and do everything I can to protect the gut, including:

  • High-doses of probiotics (100–600 billion CFU/day)
  • Strengthening the gut through natural supplements like Gut Immune
  • Checking for signs of gastritis or pain
  • Advising patients to take antibiotics with food
  • Using antifungals if signs of a fungal or yeast infection are present
I think this was a good lesson in learning to think outside of the box. Had this young lady not been diagnosed with a MAP infection, she would have continued living in chronic pain.

Has the Mystery of Crohn’s Disease Been Solved?

Less than two decades ago, experts were still debating about MAP’s roles in Crohn’s disease. Many argued that there were insufficient data to support the hypothesis that MAP could cause the disease or that it was a significant human pathogen.

But the possibility that MAP causes human disease can no longer be ignored. Crohn’s disease has become a worldwide epidemic, and there is growing evidence that it is not an autoimmune disease as previously thought.

We need reliable methods of detecting, diagnosing, and treating MAP, and the acknowledgement of its role as a cause of Crohn’s disease could be the first step in solving this complex disease.

The possibility of MAP as a cause of Crohn’s disease isn’t new, but do you think it’s the sole cause? What are your thoughts about MAP and its role in Crohn’s disease? Share your thoughts in the comments below!

References:

https://www.ncbi.nlm.nih.gov/books/NBK207651/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4046017/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4894645/

https://www.ncbi.nlm.nih.gov/pubmed/22979969/

https://www.ncbi.nlm.nih.gov/pubmed/20817803?dopt=Abstract

https://www.ncbi.nlm.nih.gov/pubmed/10742264/

https://www.ncbi.nlm.nih.gov/pubmed/19486426

https://www.ncbi.nlm.nih.gov/pubmed/21799786?dopt=Abstract

https://www.ncbi.nlm.nih.gov/pubmed/29610508?dopt=Abstract

https://aem.asm.org/content/62/9/3446

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3031217/

https://www.ncbi.nlm.nih.gov/pubmed/17671062

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2718892/

https://www.ncbi.nlm.nih.gov/pubmed/17714674/

https://www.ncbi.nlm.nih.gov/pubmed/21616547?dopt=Abstract

https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

https://www.ncbi.nlm.nih.gov/pubmed/9616310/

https://www.tandfonline.com/doi/full/10.1080/14712598.2019.1561852

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4894645/

https://www.ncbi.nlm.nih.gov/pubmed/17570206/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5654877/

https://www.sciencedirect.com/science/article/pii/S147330990870104X?via%3Dihub

https://www.gastroendonews.com/In-the-News/Article/01-19/Anti-MAP-Treatment-Tops-Placebo-in-Large-Crohn-s-Trial/53847

https://clinicaltrials.gov/ct2/show/NCT01951326?term=RHB-104&cond=Crohn+Disease&rank=1