Archive for the ‘Inflammation’ Category

Breakthrough Paves Way For New Lyme Disease Treatment

Breakthrough paves way for new Lyme disease treatment

A Virginia Tech biochemist has discovered the cellular component that contributes to Lyme arthritis, a debilitating and extremely painful condition that is the most common late stage symptom of Lyme disease, a press release said.

According to the release from Virginia Tech, the biochemist, Brandon Jutras, found that as the Lyme-causing bacteria borrelia burgdorferi multiplies, it sheds a cellular component called peptidoglycan that elicits a unique inflammatory response in the body.

“This discovery will help researchers improve diagnostic tests and may lead to new treatment options for patients suffering with Lyme arthritis,” said Jutras, lead author on the study. “This is an important finding and we think that it has major implications for many manifestations of Lyme disease, not just Lyme arthritis.”

Lyme disease is the most reported vector-borne disease in the country, and in Virginia reports have increased by more than 6,000 percent in the last fifteen years. The Centers for Disease Control, estimates that approximately 300,000 people are diagnosed with Lyme disease annually in the United States. Scientists predict that the number of people who become infected Lyme will increase as our climate continues to change.

Jutras — an assistant professor of biochemistry in the College of Agriculture and Life Sciences and an affiliated faculty member of the Fralin Life Sciences Institute — and his collaborators recently published their findings in the Proceedings of the National Academy of Sciences.

According to the release, the PNAS paper was four years in the making, and Jutras began this research during his post-doctoral fellowship in the lab of Christine Jacobs-Wagner, a Howard Hughes Medical Institute Investigator and professor at Yale University.

“Nowadays nothing significant in science is accomplished without collaboration,” said Jutras. Co-authors on this paper ranged from bench scientists to medical doctors and practicing physicians. Dr. Allen Steere, a Harvard doctor who originally identified Lyme disease in the 1970s, assisted Jutras with his research and provided access to patient samples.

The research could provide a new way to diagnose Lyme disease and Lyme arthritis for patients with vague symptoms based on the presence of the cellular component called peptidoglycan in synovial fluid.

Read: Every spot in Virginia is a hotspot for ticks

The press release said, the team found peptidoglycan is a major contributor to Lyme arthritis in late-stage Lyme disease patients. Peptidoglycan is an essential component of bacterial cell walls. All bacteria have some form of peptidoglycan, but the form found in the bacteria that causes Lyme, borrelia burgdorferi, has a unique chemical structure. When the bacteria multiply, they shed peptidoglycan into the extracellular environment, because its genome does not have the appropriate proteins to recycle it back into the cell.

“We can actually detect peptidoglycan in the synovial fluid of the affected, inflamed joints of patients that have all the symptoms of Lyme arthritis but no longer have an obvious, active infection,” said Jutras in the release.

Peptidoglycan elicits an inflammatory response and the molecule persists in the synovial fluid, which means that our bodies continue to respond, without mounting a counter response.

Receptors in our immune system sense bacterial products and, depending on the individual’s genetic predispositions, may determine how strongly a patient’s body reacts to peptidoglycan.

The next phase of Jutras’ work is to use methods to destroy the peptidoglycan, or intervene to prevent a response, which could get rid of Lyme disease symptoms. According to the release, Jutras predicts that with either therapy patients would start recovering sooner.

Breakthrough paves way for new Lyme disease treatment, as discussed in this video provided by Virginia Tech. Video provided by Virginia Tech, Staunton News Leader

Clinical samples included in this study were obtained from patients that had confirmed cases of Lyme disease under the guidelines of the CDC, but virtually all did not respond to oral and/or intravenous antibiotic treatment, the release said. The presence of peptidoglycan in these patients’ synovial fluids may explain why some people experience symptoms of late stage Lyme disease in the absence of an obvious infection. In this case, the usual antibiotic treatments for Lyme disease would no longer be helpful, but this discovery might provide avenues for new treatments, the press release said.

Members of the Jacobs-Wagner lab purified the peptidoglycan and removed all other bacterial components and asked: is peptidoglycan all on its own capable of causing arthritis in a mouse model?

According to the release, within 24 hours post-injection, mice presented with dramatic joint inflammation, indicating that peptidoglycan can cause arthritis.

Jutras is continuing his research at Virginia Tech on peptidoglycan by more thoroughly studying its chemical composition to determine how it is able to persist in the human body. This will also help further the understanding of how this bacterial product contributes to other manifestations of Lyme disease.

“We are interested in understanding everything associated with how patients respond, how we can prevent that response, and how we could possibly intervene with blocking therapies or therapies that eliminate the molecule entirely,” Jutras said.

This article brings up more questions than answers.
1) Were these patients used for this study truly treated appropriately to begin with?  For example, was the mono-therapy of doxycycline only used for a short period of time?  This treatment has been shown again and again to have treatment failures from the beginning of time. For examples of effective treatment:  In a nutshell, effective treatment takes into account pleomorphism, polymmcrobialism, and biofilm. Doxy alone will not do these things.
2) Would an anti-peptidoglycan treatment only be a bandaid covering up a systemic infection? Everything I know about borrelia would answer a resounding “yes,” to this question.  While that may not be a bad thing, we must be honest about what the treatment’s really doing as well as the fact borrelia can persist in the human body, something The Cabal isn’t admitting at this point. Again, we truly need to end this Lyme War and according to microbiologist Tom Grier, that isn’t going to happen until post mortem studies are completed: Isn’t it a bit ironic that The Cabal is just fine with creating a patentable drug but NOT fine with doing the proper science that would put all of this to rest?
3) Bandaids on symptoms are used all the time to lesson pain and other symptoms; however, they shouldn’t be used at the expense of true, effective treatment for a systemic infection that’s relapsing in nature. In the case of Lyme disease, that would simply mean long-term antimicrobials. While I do not know the study parameters used here my guess would be the treatment that “didn’t work” was the mono-therapy of doxycycline which certainly doesn’t work for many coinfections such as Babesia, as well as the fact Eva Sapi has shown it to push the spirochete into the noncell wall form invitro:
Just this year another study was done about it by Caskey et al.:

Treatment failures were found in Lyme arthritic patients who were treated with intramuscular (IM) benzathine penicillin following steroids. [3]

In another study, two patients were ill for 3 years and one patient for 6 years despite receiving intravenous (IV) ceftriaxone. The authors explained, “Patients unresponsive to ceftriaxone were more likely to have received corticosteroid treatment.” Dattwyler et al. from Stony Brook Medical Center found an “association of steroid use with an increased failure rate or worsening of disease is understandable in view of the well-known effects of these agents on the inflammatory and immune responses.”

Dattwyler advised against the use of steroids in Lyme disease patients based on these two studies. “In view of the strong association between the use of steroids and the lack of response to antibiotic therapy, we believe that glucocorticoids should not be used in the treatment of Lyme borreliosis.” [2]

This article highlights yet again the importance of needing the right research to be done. The Cabal continues full-steam ahead doing research built upon false premises that could hurt patients in the end.


What You Need to Know About Neuralgia Caused by Lyme/MSIDS

Many Lyme/MSIDS patients suffer with neuralgia, a twenty dollar word for pain due to irritated or damaged nerves. The following articles do a great job explaining it. I was elated to see that the first article written this month attributes Lyme disease to causing it, along with other infections. My guess is Bartonella, Babesia, Mycoplasma, Brucella, and possibly other tick-borne illnesses, including viruses, could all play a part. Because the CDC/NIH/IDSA do not accept the fact this is often times a polymicrobial illness (infected with far more than just Lyme), and many of the coinfections are not reportable, authorities have absolutely no idea about prevalence.  

My guess is there are many diagnosed with neuralgia that have an undiagnosed Lyme/MSIDS infection.

What to know about neuralgia

Last reviewed
Neuralgia refers to severe, shooting pain that occurs due to a damaged or irritated nerve. Neuralgia can affect any part of the body, causing mild to severe pain. Certain medications and surgical procedures can effectively treat neuralgia.
Severe neuralgia can interfere with a person’s ability to perform everyday tasks and may impact their quality of life.
Neuralgia has many possible causes, including:
  • infections, such as shingles, Lyme disease, or HIV
  • pressure on nerves from bones, blood vessels, or tumors
  • other medical conditions, such as kidney disease or diabetes
  • aging

    Types of neuralgia

    Healthcare professionals divide neuralgia into categories depending on the areas of the body it affects. The following are some common types of neuralgia:

    Trigeminal neuralgia

    Woman experiencing headache and neuralgia in face holding glass of water in pain

Trigeminal neuralgia (TN) involves the trigeminal nerve in the head. It has three branches that send signals from the brain to the face, mouth, teeth, and nose.

TN falls into two subdivisions: type 1 and type 2.

Type 1 TN causes a painful burning or electric shock-like sensation in parts of the face. People with type 1 TN experience irregular episodes that come on suddenly.

The duration of these episodes varies among people but can last up to 2 minutes, according to the National Institute of Neurological Disorders and Stroke.

Type 2 TN produces a constant, dull aching sensation in the face.

The exact cause of TN remains unclear. However, pressure from an enlarged blood vessel can irritate or even damage the trigeminal nerve.

Multiple sclerosis (MS) can give rise to TN. MS is a neurological disorder that causes inflammation that damages the myelin sheath surrounding nerve fibers in the central nervous system.

Postherpetic neuralgia

Postherpetic neuralgia (PHN) is a painful condition that affects the nerves in the skin.

According to the Centers for Disease Control and Prevention (CDC), PHN is the most common complication of shingles, affecting about 10–13% of people who develop it.

Shingles is a viral infection that causes blisters and a painful skin rash. The varicella-zoster virus, which causes chickenpox, remains dormant in the nervous system and reactivates later in life, causing shingles.

When the virus reactivates, it can cause inflammation in the nerve fibers. This inflammation can lead to permanent nerve damage that causes pain, even after the infection subsides.

Occipital neuralgia

This form of neuralgia affects the occipital nerves, which originate in the neck and send signals to the back of the head.

Occipital neuralgia causes a throbbing or shooting pain that starts near the base of the skull and radiates along the scalp. Occipital neuralgia pain can flow to the back of the eyes.

Occipital neuralgia has numerous potential causes, including:

  • sudden head movements
  • tense neck muscles
  • lesions or tumors in the neck
  • inflamed blood vessels
  • infections
  • gout
  • diabetes
  • neck injuries

Peripheral neuralgia

Difficulty eating or swallowing are potential symptoms of peripheral neuralgia.


Peripheral neuralgia, or peripheral neuropathy, refers to pain that occurs due to nerve damage in the peripheral nervous system. This includes all nerve fibers outside of the brain and spinal cord.

Peripheral neuralgia can affect a single nerve or entire nerve groups.

Sustaining damage to the peripheral nervous system can affect nerves that control muscle movements, transmit sensory information, and regulate internal organs.

Peripheral neuralgia can cause pain or numbnessin the hands, feet, arms, and legs. Other symptoms may include:

  • involuntary muscle twitching or cramping
  • loss of coordination
  • difficulty performing complex motor tasks, such as buttoning a shirt or tying shoelaces
  • hypersensitivity to touch or temperature
  • excess sweating
  • gastrointestinal problems
  • difficulty eating or swallowing
  • difficulty speaking

Intercostal neuralgia

Intercostal neuralgia affects the nerves that sit just below the ribs. Doctors call the muscles in this area the intercostal muscles.

Several potential factors may contribute to intercostal neuralgia, such as:

  • injuries or surgical procedures that involve the chest
  • pressure on the nerves
  • shingles or other viral infections

Intercostal neuralgia causes a sharp, burning pain that affects the chest wall, upper abdomen, and upper back. Certain physical movements, such as breathing, coughing, or laughing, can worsen the pain.

Additional symptoms may include:

  • tightness or pressure that wraps around the chest
  • tingling or numbness in the upper chest or upper back
  • muscle twitching
  • loss of appetite

Diabetic neuropathy

Diabetic neuropathy is the most common complication of diabetes. Because diabetes affects so many people, rates of peripheral neuropathy are now beginning to rise.

Symptoms include loss of balance and numbness, tingling, and pain. The best way to prevent diabetic neuropathy is to bring blood sugar levels within a suitable range.



In general, neuralgia causes intense and distinct symptoms, including:

  • sudden episodes of extreme shooting or stabbing pain that follows the path of a damaged or irritated nerve
  • persistent aching or burning pain
  • tingling or numbness
  • muscle weakness
  • loss of muscle mass, or atrophy
  • involuntary muscle twitching or cramping



Treatment options for neuralgia vary depending on the type and severity of the condition.

Topical ointments, local nerve block, and steroid injections may offer temporary pain relief for mild neuralgia.

Treating severe neuralgia pain may require prescription medications, surgical procedures, or both.


A doctor may prescribe medication to treat neuralgia.

  • anticonvulsants, such as carbamazepine, topiramate, and lamotrigine
  • antidepressants, such as amitriptyline
  • muscle relaxants, such as baclofen
  • membrane-stabilizing medications, such as gabapentin


Some surgical procedures can help relieve neuralgia pain when the condition does not respond to medication.

Examples of surgical procedures that can help treat neuralgia include:

  • Microvascular decompression: This helps remove an enlarged blood vessel pressing on a nerve. The procedure involves placing a soft pad between the blood vessel and the affected nerve.
  • Stereotactic surgery: This is a noninvasive procedure that delivers highly concentrated radiation beams to the root of a damaged nerve. The radiation disrupts the transmission of pain signals to the brain.
  • Balloon compression: This involves inserting a small balloon into the affected nerve. The balloon inflates, resulting in controlled, intentional nerve damage. This procedure prevents the affected nerve from sending pain signals to the brain. However, the effects of the procedure usually wear off after 1–2 years.


Outlook and takeaway

Neuralgia causes painful symptoms that vary in duration and severity. As well as pain, neuralgia can cause numbness, muscle weakness, and hypersensitivity.

If a person does not receive treatment, neuralgia can interfere with their ability to perform daily tasks.

People can work with a healthcare provider to establish the best course of treatment for their specific symptoms. If the condition does not respond to initial treatments, a healthcare provider may refer the person to a pain management specialist.



They don’t list antimicrobial treatment as a treatment for this, but it is. Again, if Lyme/MSIDS is behind it, the only thing that’s going to squash this pain at the root is to eradicate the pathogens behind it.  Nothing touched this pain for me but long-term antimicrobials.  While some of the listed treatments may help, they are bandaids. I talk more about this further down.  Keep reading….

What you need to know about occipital neuralgia

Last reviewed
Occipital neuralgia is the term for a headache that starts in the upper neck or back of the head and spreads or radiates behind the eyes, forehead, and up to the scalp.


Headaches are one the world’s most common health problems, with 80-90 percent of Americans experiencing a “tension headache” at some point in their lives.

More painful migraine, cluster, and other headaches are a leading cause of doctor or emergency room visits.

Although headaches are a common health problem, occipital neuralgia is a specific type of headache. According to the American Migraine Foundation, it is also rare, affecting only 3.2 people out of every 100,000 a year.

Fast facts on occipital neuralgia:
  • It is called occipital because it affects the area around the occipital bone.
  • Pain associated with occipital neuralgia is often sudden and severe.
  • Symptoms can be alarming, but they are not usually associated with any life-threatening health conditions.

How is it different from other headaches?

man holding the back of his neck


Headaches due to occipital neuralgia are frequently quite painful, starting with a sharp, stabbing pain, but most people with this condition respond well to treatment and most recover.

Occipital neuralgia is different from other types of headaches in two ways:

  1. The cause of the condition.
  2. The specific places where individuals feel pain.

Other headaches have more general causes, which can range from sinus infections to high blood pressure to medications and many other potential triggers.

But occipital neuralgia only develops when the occipital nerves are irritated or injured. These nerves are found at the second and third vertebrae of the neck.

Occipital neuralgia pain will only develop in areas touched by the greater, lesser, and third occipital nerves.

With one on each side of the head, the occipital nerves run from the spine to the scalp, and sensitivity can develop anywhere along this route.

What are the main symptoms?

lady touching side of face whilst lying in bed


For most people, the pain strikes on only one side of the head. It also tends to spread, usually from where the skull meets the neck, and then traveling up the back of the head and to the sides or behind the eyes.

In many individuals, the scalp can be affected, especially where the occipital nerves connect.

It can feel sore or extremely sensitive.

Light may also irritate the eyes.

Occipital neuralgia is described as coming in bursts of pain that come and go, lasting for a few seconds or minutes. At times, individuals may experience a lingering ache between more extreme bouts of pain.

Small movements can trigger an outburst of pain from occipital neuralgia. These movements include:

  • turning the head to the side
  • putting the head down on a pillow
  • brushing or washing the hair

The pain can be quite intense, which can prompt some individuals with the condition to say it is like a migraine or a cluster headache, even though these are different types and require different treatments.

What causes it?

Different conditions and circumstances can irritate the occipital nerves, which then give rise to occipital neuralgia.


Injuries to the neck area, such as whiplash from a car accident or some other sort of trauma, can damage the occipital nerves and lead to this condition.

Muscular problems

Tight muscles in the neck and the back of the head can put the squeeze on occipital nerves and pinch or entrap them, which can also lead to occipital neuralgia.

Back issues

Problems with the spine, such as arthritis, degenerating discs, or spondylosis, are possible sources of pressure on the occipital nerves, as are tumors.

Other causes

Other conditions that can play a role in developing occipital neuralgia include:

In many cases, it is not possible for someone to identify a single factor that damaged or irritated the occipital nerves.

How is it diagnosed?

doctor examining women's head and neck


A doctor taking a medical history and conducting a physical exam diagnoses occipital neuralgia.

This condition causes extreme tenderness along the occipital nerves. So, during a physical exam, the doctor may press on these areas to see if the pressure generates pain.

It is not always easy to diagnose occipital neuralgia because it has similar characteristics to many other kinds of headaches.

After initial exams, a doctor may order more involved tests.

One way to diagnose occipital neuralgia can also provide relief.

If a nerve block injected between the C2 and C3 vertebrae makes the symptoms go away, it is a strong indication of occipital neuralgia.

Deadening the nerves with anesthetics and corticosteroids helps individuals feel better, although the effects are temporary, only lasting about 12 weeks. However, injections into the vertebrae and numbing nerves are involved procedures, so a doctor will often pursue less invasive treatments first.

Can it be prevented?

For some people, antiepileptic medications and tricyclic antidepressants can prevent bouts of pain due to occipital neuralgia.


Doctors will usually recommend straightforward treatments when individuals are first diagnosed with occipital neuralgia. These include:

The aim is to provide many people with relief by relaxing and releasing the muscles that are putting pressure on the occipital nerves.

Other medications, such as muscle relaxants and anticonvulsants, can help offset symptoms.

Nerve blockers

Nerve-blocking injections, which are used to diagnose the condition, can also be used to prevent pain.

Pulsed radiofrequency

Pulsed radiofrequency may be employed to stimulate the occipital nerves to keep them from sending pain signals. Although this procedure is more invasive than massage and medication, it does not damage any nerves or nearby tissue.


Surgery is reserved for the most painful and difficult cases. Through a process called microvascular decompression, doctors eliminate pressure on the nerves by moving encroaching blood vessels out of the way.

Home remedies

Home remedies can do a lot to relieve the pain when tight muscles, injury, and stress cause occipital neuralgia.

Rest, massage, and warm compresses can help individuals work out the kinks that are creating pressure in their necks.

Physical therapy can help individuals work through the crisis phase of their occipital neuralgia and provide them with exercises they can do to prevent a recurrence of this painful condition.



Again, they don’t state that proper antimicrobials addressing the systemic infection causing this as a treatment, but it is.  And for Lyme/MSIDS patients, it’s an extremely important treatment because as I stated before, all the others are mere bandaids.

This occipital neuralgia was my Achilles Heel and thorn in my side for years due to Lyme/MSIDS. I even had a MRI to rule out Chiari, which can be the result of a systemic infection.  I met 3 people in the same week with a Lyme/MSIDS diagnosis who also had Chiari:

One of the best drugs for me was minocycline, due to its ability to cross the blood, brain barrier:

I’m certain there are plenty more patients with this symptom who have an undiagnosed Lyme/MSIDS infection.

Home remedies wouldn’t touch this pain with a 10 foot pole, much less NSAIDS.  I would caution the use of corticosteroids as these will suppress your immune system. The caveat would be if you are on an antimicrobial regimen and your practitioner is monitoring you.  I also caution the use of NSAIDS as taking massive doses of Ibuprofen about shut my husband’s liver down.

This pain may be the person’s first acknowledged symptom of Lyme/MSIDS.  Often men will suffer and self medicate and deny a real problem.  This is where spouses, friends, and family need to be educated about the possibility of a tick borne illness so they can mention it to the suffering person. If you are popping NSIDS like candy, something’s wrong.  Getting them to an open-minded, trained practitioner who will consider tick borne illness is your next job.  Contact your local support group for a list of ILADS-trained doctors.

Also, this pain for me radiated to the right side of my head from the occipital area to the right temple. There were times my right shoulder was involved with pain and numbness going all the way down my arm into my right pinkie finger.  The finger would also move on its own.  This can happen anywhere in the body.

The following neurological conditions may be responsible for headaches on one side:

  • Occipital neuralgia: This occurs when nerves running from the top of the spinal cord to the scalp (occipital nerves) become damaged or inflamed. Symptoms include sharp pain in the back of the head and neck, pain behind the eye, and sensitivity to light.
  • Temporal arteritis: Arteries in the head and neck become inflamed with temporal arteritis. Along with muscle pain, it causes a severe headache on the side of the head. Other symptoms include fatigue, jaw pain, and tender temples.
  • Trigeminal neuralgia: This causes intense pain in the face and head. The pain usually affects only one side at a time. It is caused by disruption to the trigeminal nerve at the base of the brain.
Lyme/MSIDS infections can be behind all of this.  Spread the word.
















What To Do When You Hit a Plateau In Treatment

By Kerry Heckman

My numbers won’t budge. Every month I go in for a blood test and every month I get an email from my doctor stating that my inflammatory markers are the same. The numbers are not so high to cause a panic, but they’re not low enough to signal any real improvement either. I’ve tried everything from meditation to medication, but nothing seems to work. Each month I pray the numbers will drop and I’m devastated when month after month they stay the same.

I’ve put in all the work; there’s been no stinting. I’ve been in treatment for three years. I’ve changed my lifestyle, my diet, and most difficult of all, my mindset. But I keep coming up short. There’s no doubt I’m better. My bedridden days are mostly in the past, and the pain that keeps me up at night (painsomnia, I call it) happens once or twice week instead of every day. Another marker of my improvement is after treatment my herxheimer reactions are greatly diminished. These are positive trends, but still I am not where I want to be. I want clinical proof that my recovery is real. I want to know unequivocally that I’m heading toward remission. I’ve  been at this dreaded plateau for months waiting to break free. I anxiously await the day when my inflammatory markers take a dramatic drop.

Your plateau may be different than mine. Maybe you, too, made big improvements in the beginning and now it’s tapering off, or maybe you’re stuck waiting for any minuscule improvement at all. Either way the lack of progress may be the hardest thing to bear.

All this was weighing heavily on me. Then one day I started thinking about actual plateaus in nature. Consider for a moment you are climbing up a mountain and reach a plateau. You’ve done the grueling work of going up the mountain and now you are walking on level ground. You are still moving forward, that hasn’t changed, but you’re not increasing your elevation. Maybe that’s what plateaus are in treatment—a leveling off that doesn’t feel like progress, because you aren’t climbing anymore. But you have achieved an incremental improvement in your recovery.

This bit of visualization changed the way I thought about my lack of headway, though  there were still some questions I needed to ask myself— questions you may need to  ask yourself as well:

Q: Have I really plateaued or is my progress just going slowly?

A: With Lyme disease the improvement can be slow . . . very slow. As they say, any progress is good progress. If you feel comfortable with your treatment protocol, you may need to practice patience and remember you are getting better. However, sometimes the progress is too slow and even if there is incremental improvement you may want talk to your doctor about exploring ways to speed up your treatment plan.

Q: Have you hit a plateau before? What helped jumpstart my healing?

A: If this has happened before, what was it that made the difference? Maybe it’s a new supplement or an increased dose of medication. Maybe your thyroid or adrenals are out of balance and need attention. Try to remember back to what helped you before and try it again. It may help to keep a journal about what you think is and isn’t working for you.

Q: Do I need to change my treatment or ride it out?

A: As I said, with Lyme getting better takes time. Ask yourself if you think your current treatment plan is sufficient to to get you better. This is a good place to use your intuition. If you feel skeptical every time you meet with your doctor that might be your body telling you something.

Q: If I plan to stay the course when will I know it’s time to adjust?

A: Give yourself a timeline—six months, nine months—for when you want to reevaluate. Verbalize your timeline to your doctor, so she or he knows what you’re thinking. Ask if there is a test that can be run at that time to compare where you were before to where you are now.

Q: Am I testing too often?

A: If you’re like me and your numbers aren’t budging, maybe it’s time to put more space between tests. This depends naturally on what is medically advisable. But I I did realize that the constant testing was causing me frequent disappointments, which weren’t good for my healing. I have since decided to go from once a month to once every other month for my bloodwork and focus on other things in the meantime.

Q: Is there something else I could do to move forward?

A: A plateau is the perfect time to reevaluate your habits. Perhaps it’s time to add more nutrients to your diet or increase detox. Have you always wanted to try a complementary therapy? Now may be the time. Or are there other options?

Q: Is this a good time for a healing pause?

A: Have no doubts, recovery from Lyme treatment is a full-time job. It seems like there’s always something else you can try, but is that the best thing for your body? This could be an indication that it’s time to take a break from all the intensity and let your body rest at the top of the mountain.

Take some time and ask yourself these questions. Get quiet and let your intuition speak. There are few doctors, medications, or therapies that can give us as much insight as our own common sense. Remember the image of the mountain and keep walking forward on the level ground of the plateau—the uphill slope may be only a few steps ahead.

kerry heckman

Opinions expressed by contributors are their own.

Kerry J. Heckman is a licensed therapist and author of the healing and wellness blog Words Heal. She was diagnosed with chronic Lyme disease in 2016.





Great article to begin meaningful dialogue.

  1.  Not sure what tests she keeps having done but I’ve heard mixed opinions about the CD-57 test which some docs swear by and others like my own say it’s a general, very basic indicator of immunity and unless you have the number before you were sick and then taken at regular intervals throughout treatment, it’s just a number.
  2. Inflammation is a definite bad-boy.  One thing I discovered to eventually help me was MSM; however, I didn’t notice the help taking it while in treatment, only after treatment did it seem to really crush pain and inflammation:  This article also shows it’s good for the gut:
  3. Another thing that helped this inflammation/pain for me was systemic enzymes:  There are many brands out there.  You might have to try a few to find one that works. I’ve tried different variations of Wobenzym as well as a brand my doctor sells. (I’m not affiliated with any companies)
  4. LDN was also a game changer: I use a compounded form with only olive oil as an additive.
  5. For many, Lyme/MSIDS causes imbalances and deficiencies in the body. Finding out what those are and supplementing can make all the difference.  For instance, most patients struggle with thyroid dysfunction (as well as other hormones) and magnesium deficiency (magnesium can help depression and 1,000 other things): (In the comment section I give the kind my LLMD sells in his office and it’s been particularly successful. Again – no monies are exchanging hands) Most of us Northerners are deficient in vitamin D.
  6. I’ll never forget the ranger in the documentary, “Under Our Skin,” state that he never could have imagined that his greatest improvement would come AFTER three years of treatment.  This has been my experience and my husband’s as well.  I must add that after 4.5 years of treatment for us, and two relapses requiring 2-3 month stints of treatment, we got better EACH TIME we treated. This very well could be the “cycling” approached discussed by Dr. Burrascano here:  In brief:  he found that cycling 3-4 times typically worked for most patients. Ironically, the 3rd cycle yielded the worst herx.  Pam Weintraub wrote about this in, “Cure Unknown:  Inside the Lyme Disease Epidemic,” way back in the 90’s, yet few doctors do this. Cycling just means that after you are symptom-free for 2-3 months you quit ALL treatment.  If and when symptoms return, you hit hard with antibiotics until symptoms leave again. You do this 3-4 times.  Burrascano states his symptoms never returned and many of his patients had the same experience.
  7. Sometimes diet has made all the difference for some patients – like cutting out gluten or dairy or both. For some, herbs or treatments for inflammation made all the difference or help with sleep.  I’ve also known patients who got better only after they treated for worms/parasites:
  8. When I hit a plateau after years of treatment yet still had symptoms, I called another LLMD I knew and asked if he’d be willing to do a phone consultation with me, not as a treating physician, but as a second ear to hear what I’ve done to give me ideas for any omissions he saw. That phone call was worth every penny as he carefully listened to what I’d done and gave me ideas for things to try.  Very helpful. I then took that knowledge to my LLMD and he was smart enough to implement them at my request based on another experienced practitioner’s wisdom.
  9. Lastly, I’ve found surrounding myself with experienced patients and doctors to be extremely helpful. You learn a lot by sharing your experiences and always come away with something you haven’t tried before.  Don’t let this information bog you down. Only try 1 thing at a time so you can track any changes. Support Group is a great place to do this.  Always run things by your practitioner as there might be drug interactions or things you need to consider or can’t try at all based on your specific issues/drug interactions.
I’ve learned the most from patients who are on the same journey. Don’t isolate yourself.

Neuronal Loss or Dysfunction in Patients With Early Lyme

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.



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).


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.


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.


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


For more:

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


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

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:





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:

Appropriate Babesia treatment was also crucial:

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:  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:

I also added in systemic enzymes for the same reasons, although both MSM & enzymes do 1,000 beneficial things:

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:

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

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.’


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.


  • 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. 



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:  Cases of Bartonella with NO cat exposure listed in comment section.

More about Bartonella & Treatments:

Pets can also bring ticks into the house to infect you:

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

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.


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.


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.



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).
  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:  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:  Within this article is another article in “,” 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:  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.