In the Summer of 2016, 14 year old Ashley was healthy and happy.  Looking forward to vacationing with family friends. By mid July Ashley suddenly felt very different.   Nausea, aches, pains and horrible head pressure. A headache like she had never experienced. Deep intracranial pressure, unrelenting, day & night. A local hospital tested Ashley for Lyme.  The results were negative. That was that, it was a hospital test after all. A pediatric neurologist in Manhattan was the first to mention a difficult headache called New Daily Persistent Headache. Ashley’s mom finally felt maybe they were getting somewhere, a diagnosis. Elavil, a nerve pain medication and Tizanidine, a muscle relaxer were prescribed.  Months and no change, the headache was constant. The doctor discontinued the Elavil and put Ashley on Topiramate. Topiramate is also a nerve pain medication and also an anticonvulsant used for treating seizures and migraine. Ashley’s mom Tina had been doing her homework. Pouring over articles online, Tina learned that Lyme disease can often produce the symptoms that Ashley was haunted with and that Lyme tests were often inconclusive and false.  

 

A new doctor and new tests, this time with a Lyme Literate Medical Doctor. This doctor, based upon clinical observation put Ashley on Doxycycline. Tests were eventually ordered from a lab called Igenex.  

 

The Igenex tests came back negative for Lyme but positive, “off the charts positive” for Bartonella and positive for Babesia. Both common coinfections of Lyme infection.  It is possible to get these co-infections without Lyme. She also tested positive for recent HHV-6 and clinically diagnosed with Mast Cell Activation Syndrome. Bartonella is actually quite common.  It is common in the cat population and can easily be transmitted to humans through a scratch, flea or tick. For most people, the immune system is quite capable of suppressing this bacteria. Perhaps for some, maybe a combination of genetics and environment, a perfect storm happens and chronic infection overwhelms the central nervous system. Just prior to getting sick, Ashley received the Gardasil vaccine.  There are some who speculate that the aluminum adjuvant nano-particle substrates contained in Gardasil react in those with certain genetic predispositions causing a cascade of excessive inflammation, activating dormant pathogens such as bartonella, babesia, HHV’s, etc. Ashleys doctor still did not dismiss the possibility of Lyme along with these coinfections as Ashley was taking doxycycline which perhaps suppressed the sensitivity of the test.  Ashley started a heavy protocol of antibiotics along with an antiviral. Two months of Zithromax. One month of Ceftin. Three months alternating between Zithromax and Tinidazole. Including the Doxycycline, Ashley was on antibiotics for nine months. In February 2018, Ashley said her headache began to “break-up” and by the end of the month, it was pretty much gone. For the past six months Ashley’s big headache is gone. She still takes some supplements, Dolevent. She recognizes she is more prone to headaches now.  When she is stressed, dehydrated, not sleeping regularly etc. But, the BIG headache is gone. So was it the pathogen protocol or the Topiramate?

 

There are other chronic daily headache related reports speculating that bartonella may be involved in some cases. Dr. Daniel Jaller in Rockville, Maryland is not afraid to treat complex chronically ill patients.  He is not afraid of scrutiny, he “practices” medicine. He treats: ME/CFS, fibromyalgia, small fibre neuropathy, chronic headache, lyme & lyme related diseases as well as undiagnosed chronically ill patients. In 2014 he shared a clinical observation involving a 25 year old female with a new onset chronic daily headache. An unrelenting headache for over 18 months. The headache began shortly after returning from a camping trip. One year prior she had tested positive EIA and ⅔ Igm Western Blot bands meeting the CDC criteria for positive lyme.  She was treated with doxycycline for 4 weeks with no impact on her headache. She was told by her neurologist that lyme disease was not relevant to her condition and an infectious disease specialist felt she was adequately treated. She had tried: topamax, neurontin, imitrex, fioricet and many other medications without effect. Upon physical examination she was completely normal with exception to subtle sensory deficits to cold objects touching her hands and feet. This was dismissed by all others, but Dr. Jaller has noted this phenomenon to be present in a high percentage of his patients with active lyme.

 

Bartonella species may be the most frequent coinfection in lyme disease.  Prior to 1990, there were only two bartonella species named, today there are over 60 known bartonella species.  The varied species may very well carry with them their own organ preferred host and unique accompanying symptomatic expression. In 2013 Maggi et al report the ability of bartonella henselae to invade the human brain vascular pericytes. Pericytes are small cells that surround endothelial cells and are an intricate constituent of the blood brain barrier. Again, bartonella can be tricky to test for.  My guess is that most folks suffering with NDPH have not had extensive bartonella ePCR testing or treated for bartonella based upon clinical diagnosis.

 

Dr. Jaller treated her with zithromax, rifampin and tindamax. Within 4 weeks the symptoms had resolved, only to return after 5 days of discontinuation.  The medication was reinstated for 3 months and the headache resolved and did not return.

 

Spend a week of inpatient headache treatment at a prominent headache center and they will likely include a Lyme panel in your workup.  Bartonella is often not included. We know, however, Lyme can be tricky to test for. A chronic pathogenic infection plays havoc on the immune system.  A disrupted immune system may not properly build the antibodies that the most common Lyme tests are looking for. Getting another opinion from Igenex or Galaxy may be warranted. Galaxy Diagnostics specializes in bartonella testing. Their ePCR test uses a triple serum draw test (draw serum every other day in attempts to catch the cycling bacteria).   

New Daily Persistent Headache is rare.  If it is merely inherited genetics, coupled with a virus or bacteria etc so many more people would have it.  New Daily Persistent Headache was first recognized in medical literature in 1986. Just over thirty years ago.  Why isn’t there reference to this headache in the literature in the hundreds of years before that? If genetics are involved then it is unlikely that only hereditary mutations are involved.  There would be many more cases of NDPH for many centuries. If somatic mutations are involved (mutations occuring during a person’s lifetime caused by an outside disruption, which don’t get inherited) then what are these outside disruptions that came to haunt us some thirty to thirty five years ago?  Perhaps the smart money is on a combination of both, Inherited mutations coupled with somatic mutations coupled with a perfect storm of stressors and pathogens. We won’t know unless we research it. Please support research.

 

Coming Soon: Genetic Variants found in those with Chronic Lyme Disease