Lyme disease and bartonellosis

Last updated July 5, 2012

This website was created by someone who has no medical training. The author makes no claim that he offers better advice than medical professionals offer.

Various friends of the author have been afflicted with Lyme disease and/or bartonellosis. Their suffering has motivated him to gather the following information from doctors, online articles, afflicted friends, and personal experience in watching a loved one suffer. The accuracy of the technical information is dependent upon the accuracy of what he has heard and read from medical professionals and online articles including Wikipedia (although Wikipedia can be edited by anyone, it is heavily monitored and moderated so that the vast majority of information is provided by learned authors).

The purpose of this website is to educate and help sufferers and their loved ones. No product is sold by the author. The content may be freely used and distributed by anyone without notifying or compensating the author.

Contents:
Overview
Transmission
Detection
Symptoms
Effects on relationships
Chronic Lyme disease
Treatment
Side effects of antibiotic treatment
Alternative remedies
Adjunctive substances and treatments
Who needs to get tested
Where to go for help
Further reading and resources


There are many vector-borne illnesses. This website focuses on Lyme disease and bartonellosis. These two diseases are very similar in terms of modes of transmission, symptomatology, and difficulty in detection. They often appear as coinfections.

There is considerable information on the Web regarding vector-borne illnesses. In the case of Lyme disease and bartonellosis, new discoveries are occurring each month as the medical community is making slow but steady progress in understanding these illnesses, so by the time many papers are published, they're already obsolete.


Overview of Lyme disease and bartonellosis

Borrelia burgdorferi (Bb) is the main cause of Lyme disease (LD) in the U.S. (Borrelia afzelii and Borrelia garinii cause most European cases.) It is a spirochete. Spirochetes belong to a phylum of distinctive Gram-negative bacteria that have long, helically coiled cells. Spirochetes are distinguished from other bacterial phyla by the location of their flagella (sometimes called axial filaments), which run lengthwise between the cell wall and outer membrane. Other diseases are caused by spirochetes, for example, syphilis is caused by the spirochete Treponema pallidum.

Bb is the most genetically complex bacterium identified to date. It contains 132 functional genes, compared to the syphilis spirochete's 22. Ninety percent of these genes are novel to all bacteria. Bb contains 21 plasmids, more than any other bacteria. This characteristic allows the organism to be highly adaptive to its environment, with the ability to survive in a number of different hosts. Under stress, in the presence of antibiotics or cerebrospinal fluid (CSF), the organism changes morphology. Currently identified morphological variations include spirochetal form (coiled and uncoiled), cystic form, blebs and granules, and cell wall-deficient (L-form). They enable the organism to become latent for long periods of time, resist treatment, and evade immune recognition. (source)

Bb and red blood cells. (Source)
While only 0.2-0.3 microns wide, Bb's cell length may exceed 15 microns. (Source)
Detailed microscopic photo of Bb. (Source)


Bartonellosis is caused by a genus of Gram-negative bacteria called Bartonella. At least eight species are known to infect humans. Different species cause different diseases. For example, Bartonella henselae causes cat scratch disease, Bartonella bacilliformis causes Carrion's disease, and Bartonella quintana causes trench fever. Other species such as Bartonella vinsonii subspecies berkhoffii have an affinity for red blood cells (RBCs) and endothelial cells (cells that line the insides of our blood vessels) (source). This causes intravascular disease, which hinders nutrient and oxygen delivery to tissues, resulting in fatigue and pain, as well as cognitive and emotional problems. Bartonella actually enters RBCs (source1 source2). Bartonella's affinity for RBCs can be at least partly explained by its need for a substance called hemin, which is plentiful in RBCs. Inside RBCs the bacteria multiply, and when a biting insect takes blood from the host, it picks up infected RBCs, thereby becoming a carrier that can infect other animals or humans. At least one Bartonella species secretes a substance called deformin that causes RBCs to become misshapen (source).

Intracellular Bartonella infection starts with the secretion of adhesins that allow the bacteria to adhere to target cells (normally RBCs and endothelial cells, but possibly macrophages as well). Then the bacteria secrete effector proteins and/or DNA into those cells via the type IV secretion system. The effector proteins subvert multiple cellular functions to the benefit of the infecting pathogen. Eventually bacteria enter the target cells, where they replicate until there are an average of eight bacteria per target cell, and they remain there for the life of the cell (the exception is Bartonella bacilliformis, which typically kills RBCs). (source1 source2 source3)

While a significant portion of Bartonella cells in an infected organism are found inside RBCs, it appears that every 3-6 days there is a new RBC infection wave. This could indicate that the primary niche is another type of cell (perhaps endothelial cells, or certain bone marrow cells such as angioblasts and erythroblasts) from which new bacteria emerge every few days. (source1 source2)

Bartonellosis is possibly the most common tick-borne disease (source). How can this be, when most people have heard of Lyme disease and so few have heard of bartonellosis? Remember that "Lyme disease" is a lay term while bartonellosis is technical. Lyme disease is sometimes referred to in the medical community as borreliosis (because it is caused by a Borrelia bacterium). How many people have heard of borreliosis? Lyme disease is much easier to remember. Similarly, people are familiar with lay terms for Bartonella-caused illnesses such as cat scratch disease and trench fever. However, since many new Bartonella species have been discovered in recent years, no lay terms have been invented to refer to their diseases, so they are referred to simply as bartonellosis. Furthermore, the bacterium that causes Lyme disease was identified in 1982, and tests to detect it have been around for a long time. Most Bartonella species, on the other hand, were not discovered until many years later, so they have gone largely undetected and news of their existence has not spread nearly as much. As for how bartonellosis can be more prevalent than Lyme disease, it is thought that Bartonella, as opposed to Borrelia burgdorferi, is virtually everywhere except countries near the cold northern and southern poles (source).

Bartonella (small dark specks) and red blood cells. (Source)


Bacterial transmission vectors

Biting arthropods can transmit several parasites and thus infect us with several diseases. The most well-known vectors are ticks, which are arachnids, not insects. (Insects compose a class within the phylum arthropoda.)

North American ticks include the black-legged tick or deer tick (Ixodes scapularis, formerly Ixodes dammini), the western black-legged tick (Ixodes pacificus), the brown dog tick (Rhipicephalus sanguineus) and the American dog tick (Dermacentor variabilis). There is some debate about some tick species. For example, one source says that the Lone Star tick (Amblyomma americanum) causes LD while others such as this one say that it doesn't. The bottom line is that all ticks should be avoided because nobody except experienced entomologists can tell the species apart, and even if a tick doesn't contain Bb or Bartonella, it could very well carry any of the other vector-related pathogens.

This tiny insect is an adult deer tick. (Source)
American dog tick. (Source)
Brown dog tick. Left: fully engorged female. Top center: female. Bottom center: larva. (Source)


Ticks are not the only vectors. Any infected biting creature can transmit a number of diseases. This includes mosquitoes, fleas, lice, and biting flies (horse flies and deer flies). (source)   Bites and scratches from infected animals - including pets - can also transmit illnesses.

Mosquito. (Source)
Flea life cycle. 1: Fed adult. 2: Eggs. 3: Larva. 4: Pupa (covered with dirt). 5: Unfed adult (remains in suspended animation until it detects a host). (Source)
The louse in its 3 forms. (Source)

Horse fly. (Source)
Deer fly. (Source)


As mentioned earlier, vectors can transmit several types of parasite. Protozoa of the genus Babesia cause babesiosis, Anaplasma phagocytophilum causes human granulocytic anaplasmosis (HGA), bacteria of the genus Ehrlichia cause ehrlichiosis, Rickettsia rickettsii causes Rocky Mountain spotted fever, bacteria of the genus Mycoplasma cause mycoplasmosis, and Francisella tularensis causes tularemia. Thus it is very common for victims to be coinfected.

LD is the fastest growing vector-borne disease, due to suburban sprawl (which brings people close to forests), increasing deer populations, ticks being carried by migratory birds, and other factors (source). Additionally, since LD is carried by rodents, a decrease in numbers of foxes (which prey on rodents) might be contributing to the spread of LD (source).

Alarmingly, Bb and Bartonella can be passed from mothers to their unborn children, and also to blood transfusion recipients. (source)


Detection of bacteria

Bb and Bartonella are two extremely difficult organisms to detect. Identification is not a simple matter of having blood drawn and seeing the organism or specific antibodies in the sample. If it were that easy, everyone could be easily diagnosed. The bacteria have an affinity for bodily tissues rather than fluids. They can be difficult to culture from tissue samples. Sometimes, but not always, antibodies are found. Enzyme-linked immunosorbent assay (ELISA) is used to detect antibodies, but it is not always accurate. Another test, Western blot, is used to detect specific proteins, but this test is also not always accurate. Even when these two tests are run, a full one-third of cases go undetected. There are also occasional false positives. Why are these tests so inaccurate? For a number of reasons:

Polymerase chain reaction (PCR) tests look for DNA, but this can also result in false positives or false negatives.

A CD-57 test might be helpful. Chronic Bb infections are known to decrease the quantity of the CD-57 subset of the natural killer cells. While other infections can depress the immune system, it is believed that only Bb will depress the CD-57. (source)


Symptoms

If an infected person is lucky, he/she will develop a skin rash called erythema migrans. This will alert the victim that he/she has been infected so that prompt antibiotic treatment can kill the bacteria before it spreads throughout the body. Unfortunately this only happens about half the time, and victims are not aware that anything is wrong until the illness is systemic.

Bb can inhibit the immune system, activate inflammatory processes, and trigger autoimmunity by mimicking bodily cells. The result is pains, aches and weakness. Bb can adhere to a number of cell types, including glia (cells that support, feed and insulate neurons) and the interior surface of blood vessels.

In advanced LD, the spirochete crosses the blood-brain barrier (BBB). This is termed neuroborreliosis. The antibiotic minocycline is indicated because it, too, crosses the BBB. Minocycline can be neuroprotective, possibly by inhibiting inflammatory substances that damage or kill brain cells (source1 source2 source3).

Because Bartonella bacteria can burrow into our cells, they avoid our immune defenses, and the only antibiotics that have any chance of killing them are ones that also penetrate our cell walls. Azithromycin and rifampin are often preferred. Rifampin is very good at infiltrating almost all of our bodily cells, as well as the CSF because it crosses the BBB. Rifampin can cause liver damage (source). It increases the liver's production of CYP3A4, which increases the rate at which the liver metabolizes some other drugs and thereby necessitates higher doses of them. (example)

Bartonella might or might not cross the BBB, but even if it doesn't, damage to brain tissue could occur via imbalances induced by the organism. For example, induction of high systemic levels of cytokines such as tumor necrosis factor alpha, produced in response to infection, could lead to temporary or permanent damage to brain tissue.

Bartonella can mess with the immune system by secreting chemicals that turn off immunity and immune defense inflammation. For example, a lipopolysaccharide produced by Bartonella is a potent antagonist of Toll-like receptor 4 (TLR4), as it inhibits both RNA transcription and the release of tumor necrosis factor alpha, interleukin IL-1 beta, and IL-6 by E. coli lipopolysaccharide in human monocytes. This Bartonella lipopolysaccharide is so powerful that it is being looked at as a treatment for autoimmune diseases. (source).

The specific areas of the body affected by Bb and Bartonella very widely. Just about any joint or muscle can become achy, painful, tender, weak, and/or easily fatigued. Other symptoms are possible, including but not limited to fever, loss of appetite, dizziness, and loss of libido.

Both Bb and Bartonella, when they affect the brain, cause irritability, depression, cognitive impairment, short-term memory loss, and other mental problems. The psychological effects can be dramatic, causing victims to become easily upset and angry (source). One culprit is cerebral hypoperfusion (lack of oxygen and nutrient delivery) to the white matter of the brain. This is usually detected by single photon emission computed tomography (SPECT) or magnetic resonance imaging (MRI). The white matter lesions and the associated symptoms are common in demyelinating or inflammatory disorders such as multiple sclerosis and lupus, hence Lyme or bartonellosis symptoms can cause erroneous diagnoses. Furthermore, it is possible to have Bartonella-induced multiple sclerosis, so while a diagnosis of multiple sclerosis might be correct, medical personnel making the diagnosis might not know what is causing it and therefore will not know that it is curable.

Bb and Bartonella can cause RBCs to stick together (any inflammation can cause this via the body's increased production of fibrinogen). This makes it difficult for RBCs to pass through capillaries, which are only as wide as a single RBC. This contributes to hypoperfusion and the associated fatigue and psychological problems.

People who don't know they have one of these infections, but experience symptoms, are often diagnosed with "fibromyalgia" or "chronic fatigue syndrome", both of which have "unknown" causes and are "incurable". Treatment is focused merely on easing the symptoms via pain killers, steroids, behavioral therapy, exercise, antidepressants, and even antifungals. This misdiagnosis not only causes the infection to go intreated, but can also exacerbate it if steroids are given because steroids weaken immune defenses and the administration of steroids during an active infection can cause permanent damage (source).

The effects of both LD and bartonellosis in the body are profound and widespread because vascular damage and inflammation can affect every bodily system. For example, organs such as the adrenals, brain and thyroid, which produce hormones, can be disrupted, causing hormone imbalances that result in many physical and psychological symptoms such as weight gain or loss, anxiety, weakness, loss of libido, short temper, and hair loss. Additionally, the inflammatory cascade can block cellular hormone receptors, resulting in insulin resistance and hypothyroidism despite normal T3 and T4 levels.

Inflammation of the inner surface of blood vessels (the endothelium) is the first step in atherosclerosis, so Bb, Bartonella, or any other pathogen can cause heart disease and stroke. Once arterial endothelium is damaged, monocytes (a type of white blood cell) adhere to the endothelium and become macrophages (cells that rid the body of foreign cells by engulfing them). The endothelium and macrophages release free radicals, which oxidize the polyunsaturated fat portion of low density lipoproteins (LDLs), creating oxidized LDL (OxLDL). The macrophages engorge themselves with OxLDL and take on a foamy appearance, at which point they are referred to as foam cells. They form yellow fatty streaks. Platelets adhere and aggregate at the site. This causes the artery to secrete collagen, elastin and proteoglycans, leading to the formation of fibrous tissue, called a plaque, lesion or atheroma. (Note: Atherosclerosis happens only in arteries, not in veins, because arterial smooth muscle cells have binding sites for a component of LDL called apoB-100.)

(a) fatty streak;   (b) lesion;   (c) advanced lesion;    (d) obstructive lesion.    (Source)

Since many of the symptoms of LD and bartonellosis are similar, it is very common to assume that a victim has LD, since LD is the most commonly known tick-borne disease. Many sufferers actually have bartonellosis, but since most people have never heard of it, LD is used as a general term. It is important for people to be made aware that LD is but one of several vector-borne diseases.

How can one differentiate between LD and bartonellosis? Aside from a conclusive blood test, symptomatology can help. Although many symptoms of these two diseases are similar, a few differ. For example, bartonellosis sufferers sometimes get erythematous papules, which are red splotches or slightly raised red spots that may appear on the limbs, head or neck. Painful soles are also specific to bartonellosis. LD often causes joint aches, while bartonellosis is more likely to cause muscle weakness and bone pain. LD often causes sleepiness, while bartonellosis is more likely to cause insomnia.


Effects on relationships

The psychological effects can be devastating to relationships. Friends, family members and significant others have abandoned loved ones when their hypersensitivity has caused them to become critical and aggressive toward others. Bartonella in particular can cause victims to become unjustly angry at others, and this has brought about the term "Bartonella rage". Additionally, the inability to engage in social situations has left victims alone and frustrated. Victims can become so worn down and hopeless after several months without relief that they may become depressed and suicidal. It is important for loved ones to understand that it is the illness, not the person, that is being difficult to deal with. It is ironic that people can be very understanding when loved ones are afflicted with other brain disorders such as mental retardation, clinical depression and Alzheimer's disease, but when it comes to psychiatric LD/bartonellosis, they lose sight of the disease and ascribe difficult behavior to the individual rather than the disease. This might cause them to lash back verbally at, or walk out on, their afflicted loved one, which makes the victim feel even worse.

The knowledge that a loved one's behavior is caused by a physical disorder often takes a back seat when one has to deal with undeserved criticism and lack of affection every day for months on end. One's ability to be patient and understanding during this difficult time depends on a number of factors. Some people are naturally patient and/or able to let verbal abuse bounce off them; others are short-tempered and/or easily hurt by words. Most of us fall somewhere in the middle.

Perhaps an account of my personal experience will help victims' loved ones understand and cope better. In June 2007 I met a woman with whom I fell madly in love. We had an absolutely heavenly relationship. Around that time she was diagnosed with LD. An MRI of her brain showed that she had been infected for some time, but for how long we did not know. She underwent months of antibiotic treatment. The psychological effects weren't bad enough to affect our relationship, but she did often overreact when her daughter misbehaved. By the summer of 2008 antibiotics had rid her of Bb, but her behavior toward me took a turn for the worse: she became critical of many little things that had never bothered her before, and she became less affectionate. In December that year she was tested for Bartonella, since it is not uncommon for LD patients to have coinfections that remain dormant until the Bb is eradicated. The following month her doctor received a positive test result from a lab in North Carolina, so it was bartonellosis rather than LD that was affecting her behavior. For some reason he did not notify her of the positive test. In the ensuing months her condition did not improve. In fact, at times she got downright belligerent. It was very sad, frustrating and angering to watch my significant other turn into a monster. Even though I knew that it was probably some disease causing her behavior (I didn't know that it was bartonellosis but suspected that it was either that or perhaps her LD had relapsed), it still hurt to have her criticize and yell at me. I walked out on her several times (I used to sleep at her house most of the time, but we maintained separate houses), and each time I came back we would make up and she would be very sorry for her behavior, but within a few days she would give me the same harsh treatment.

After an emotional meltdown in October 2009 she finally rescheduled another appointment, where she learned of her Bartonella infection. She started antibiotic treatment (azithromycin and rifampin). Since it takes a long time to eradicate the bacteria (this will be explained in the Treatment section), her mood remained unpleasant. Both her brain and her hormones were adversely affected, and this wreaked havoc on her psyche. Rarely a day went by when she didn't criticize me about something, and not just normal relationship criticism either. Everything about me bothered her: my eating habits, my favorite TV shows, the way I cut my hair. When I'd wash dishes she'd get upset because I used "too much soap" on the sponge. Her hormonal imbalance exacerbated her PMS, causing her mood and behavior to become almost unbearable for two weeks per month. Her once strong libido all but vanished. Even though I knew on an intellectual level that this wasn't the real her, on an emotional level I started to wonder whether it was the disease causing her behavior after all. A lot of relationships start out great but eventually turn sour, so maybe this was happening to us. Was our first year together merely the "honeymoon phase"? Had the novelty worn off? Was she now taking me for granted? Were her infections merely coincidental to her behavioral change?

I developed a lot of resentment and walked out on her a few more times in the following months. Shortly before Memorial Day Weekend 2010 I had reached my breaking point. One night she was particularly nasty toward me, and the next day I told her that I needed a mental health break. After nearly two years of being her whipping boy I had had enough. I knew that she needed my support, but I would be of no use to anyone if I ended up in an asylum. During the next three weeks we remained friends and saw each other at social events. She started to improve emotionally, and as her head cleared she was very remorseful about the way she had treated me. Her mood and her libido were greatly improved. In fact, she seemed for the first time in two years to be her old self: she was very pleasant, little things didn't bother her, and we made love more times in the following month than we had all year. Even when her PMS eventually kicked in, she was able to handle it and did not become overly sensitive or critical.

One very important lesson that I learned from all this is not to lose hope. If your significant other is ill, don't lose sight of the person that he/she used to be. This doesn't mean that you must stand there and take whatever abuse your loved one dishes out, but it does mean that the relationship/marriage does not have to end.

Another lesson that I learned is that the one with the infection is not the only victim; the people close to the victim become victims as well. Although the one with the bacteria has needs, this person's loved ones have needs too. If you have an infected loved one, take care of your emotional needs. Even though your basic personality type and tolerance for harsh treatment cannot be changed, there are several other factors that you can control:

Additionally, if there are children involved, explain to them that their father/mother is ill and that the harsh treatment they receive from him/her isn't because they've done anything wrong.


Chronic Lyme disease

Much controversy surrounds the idea of chronic Lyme disease. There are certainly people who have had Lyme and/or other vector-borne diseases for a long time and have suffered many symptoms. However, a significant number of people in the medical community believe that some chronic illnesses that are not Bb-related are misdiagnosed as "chronic Lyme disease". They contend that some sufferers were never infected with Bb, and that others were infected with Bb at one time but the spirochete has been eliminated and they are now suffering from "post-Lyme disease syndrome" (source1 source2). Studies such as this one cast doubt on the prevalence of chronic LD, but it could be that either the detection methods failed for any of the reasons described above; or the "chronic Lyme" was really chronic bartonellosis, or chronic ehrlichiosis, or chronic babesiosis. All of these pathogens should be tested for before the possibility of infection is dismissed, and also to make sure that the right pathogen is identified so that the right antibiotic treatment is administered.

Lyme disease is one of the most controversial illnesses in the history of medicine (source). The controversy over chronic LD has become fierce and political. On one side are the believers, such as the International Lyme and Associated Diseases Society (ILADS). On the other side are the non-believers, who say that long regimens of antibiotics are unnecessary and even dangerous (source). This group includes the Infectious Diseases Society of America (IDSA). Many insurance companies are in the latter camp (source), perhaps in order to reduce costs rather than to provide needed treatment. Some doctors have even been prosecuted and had their licenses suspended for treating Lyme patients in a manner that departs from what medical boards define as "acceptable and prevailing standards" (example).


Treatment

There is only one way to cure LD and bartonellosis: antibiotics. But not just any antibiotics. The key to eradicating any pathogen is the right medication(s) for the right amount of time. Often times even when Bb and/or Bartonella are detected, the wrong type of antibiotic is prescribed, and/or the antibiotic is not given for a long enough duration. Leaving even a few live bacterial cells can allow later repopulation and relapse, possibly with antibiotic-resistant bacteria.

Treatment must be obtained from a doctor who is properly educated about vector-borne illnesses. Often the acronym LLMD (Lyme-literate MD) is used to describe such a person, but since several coinfections can occur with Lyme disease, LLMD is a misnomer. A better acronym might be VBILMD (vector-borne illness-literate MD).

Which antibiotics are appropriate, dosage, and how long to administer them for, depend on many factors such as which bacteria are present, whether they have gone systemic, and whether they have reached the brain/CSF, as well as the patient's age and weight. Only a medical professional who is educated specifically about LD and bartonellosis can deliver proper treatment. General practitioners often go with a "standard" antibiotic regimen, which might be ineffective.

Ironically, I was bitten by a tick in May 2011. My primary care physician would not give me prophylactic antibiotic therapy due to the IDSA's guidelines, which state:

For prevention of Lyme disease after a recognized tick bite, routine use of antimicrobial prophlylaxis or serologic testing is not recommended. A single dose of doxycycline (4mg/kgm up to 200 mg) may be offered to adults and to children over 8 yrs of age under the following conditions:
  1. The attached tick can readily be identified as an I. scapularis tick to have been attached for greater than 36 hours.
  2. Prophylaxis is started within 72 hours.
  3. Ecologic information indicates that the local rate of infection of these ticks with B. burgdorferi is greater than 20%.
  4. Doxycycline is not contraindicated as in pregnancy or children under eight years of age.
(
source)

Since it had been more than 72 hours since the bite, I did not qualify for prophylactic treatment. If I had presented with symptoms, such as joint pain or erythema migrans, I would have been put on a more aggressive antibiotic regimen, but since I did not have symptoms, I received no treatment at all. So, for peace of mind I went to a VBILMD, who, like many VBILMDs, does not take insurance, and I ended up paying several hundred dollars out of pocket.

Coinfections can greatly complicate treatment. For example, let's say a patient has both Bb and Bartonella. If the doctor is only aware of the Bb and successfully treats it, then the Bartonella might cause symptoms that are erroneously attributed to the Bb. The doctor might continue to treat the (nonexistent) Bb with an antibiotic that is effective against Bb but ineffective against Bartonella, or he/she might claim that the patient merely has "post-Lyme disease syndrome" and discontinue antibiotics altogether, so that the patient will continue to live with an undiagnosed infection. This is why it is so crucial to get treatment from a VBILMD.

Often more than one antibiotic is required even if a patient is infected with only one bacterium. For example, since Bb can take so many forms, a particular antibiotic might be effective against one form but not another, so a single antibiotic might kill only a portion of the bacterial population. One such case involved my former girlfriend, who in 2007 was given a 30-day course of intravenous ceftriaxone via a peripherally inserted central catheter in her arm. Her symptoms eased for a while, but she later relapsed. It turns out that cephalosporins such as ceftriaxone do not kill the cystic form of Bb (source). Bb has the ability to make cystic forms when exposed to antibiotics commonly used for treating Lyme disease. The effectiveness of most antibiotics requires active metabolism by the bacteria, so while active spirochetes might be killed, the cysts remain unaffected. Once antibiotic treatment is over, the cysts can reconvert to normal mobile spirochetes, causing a reactivation of the disease after an illusory cure. (Author of source requested that her material be withheld from this site.)   One antibiotic that can be effective against the cyst form is metronidazole (source1 source2). Anyway, my former girlfriend started minocycline after her relapse, and within eight months she was Bb-free.

It has been suggested that Bb can produce beta-lactamase, which degrades beta-lactam antibiotics such as cephalosporins and penicillins (source). Perhaps this is why ceftriaxone is not completely effective against Bb. The addition of a beta-lactamase inhibitor such as sulbactam or clavulanate can greatly increase the efficacy of beta-lactam antibiotics (for example, Augmentin is a mixture of amoxicillin and clavulanate).

Another mechanism by which Bb might resist penicillin is the production of penicillin-binding proteins (source). Clavulanate might be able to bind to them, thus reducung Bb's resistance to penicillin whether or not the cells produce beta-lactamase (source).

Antibiotic treatment can take many months if LD and bartonellosis are not caught early. Why should this be, when other infections such as strep throat can be cleared up within a week or two? One reason is the longer life cycle. Bartonella takes 24 hours to divide, and Bb takes anywhere from 12 hours to 7 days -- much longer than that of Streptococcus pyogenes (the bacterium that causes strep throat), which takes anywhere from 20 minutes to 8 hours to divide. Since most antibiotics work best while bacteria are replicating, a longer replication cycle necessitates a longer treatment course. (source1 source2)

Even so, why should treatment take so much longer than the replication time? Aren't all bacteria killed once they try to replicate? Unfortunately, no. Experts do not yet know why. Perhaps lethal antibiotic concentrations are not reached in all infected cells.

Other medications might be needed during antibiotic treatment. For example, since there can be temporary hypothyroidism from thyroid disruption, T3 and/or T4 supplements might be needed. These may relieve some of the aches, weakness and/or depression that hypothyroidism can cause. Mental problems such as depression, ADD/ADHD and irritability can be treated by a psychiatrist with SSRIs, SNRIs, NDRIs and/or sedatives.

Note that problems such as ADD/ADHD can be caused by things other than infections. For information about symptoms of and treatment for ADD/ADHD, click here.


Side effects of antibiotic treatment

Once antibiotic treatment begins, patients often experience the Herxheimer reaction, which occurs when large quantities of toxins are released into the body as bacteria die from antibiotic treatment. Typically this occurs faster than the body can remove the toxins. "Herxing" is manifested by fever, chills, headache, myalgia (muscle pain), etc. It can last for as little as a few hours or, in the case of LD and bartonellosis, months.

One might ask, "What specific toxins do bacteria release when they die?" Little data is available on this matter, because there is currently no reliable test for identifying these toxins. The existence of toxins is usually inferred from symptoms and the presence of cytokines, hormone resistance, etc.

One possible toxin produced by Bb is ammonia. Ammonia can cause "leaky brain syndrome" by damaging the BBB, thus enabling larger molecules to cross, touch brain tissues, and cause hypersensitivities, cognitive dysfunction, and other problems (source). Ammonia can also redistribute cerebral blood flow from cortical to sub-cortical structures (source).

It could be that ammonium compounds, rather than ammonia per se, are produced by bacteria. For example, ciguatoxin, which is produced in fish by certain dinoflagellates, is an ammonium compound (source).

Click here for some general information about bacterial toxins.

Cytokines produced by the victim's body in response to bacterial toxins can be a significant component of the Herxheimer reaction.

Some sources recommend cholestyramine to aid in the binding/elimination of toxins, but other sources oppose it either because they don't believe cholestyramine works, or because cholestyramine can also bind/eliminate medications and vitamins.

A common side effect of long-term oral antibiotics is proliferation of yeast, mainly Candida albicans, which is normally a minor fraction of the gut flora but becomes a major part as bacteria - both harmful and beneficial - are killed. The symptoms of candidiasis are usually intestinal bloating, cramps, poor digestion, constipation and/or diarrhea. In advanced cases the normally round yeast can metamorphose into a mycelial form that shoots out filaments that penetrate into the intestinal walls, thus allowing undigested food, yeast and bacteria that normally stay in the gut to pass through into the bloodstream (source). This is called leaky gut syndrome.

Candida albicans in normal form. (Source)
Candida albicans in mycelial form. (Source)
Candida albicans burrowing into living tissue. (Source)

There are some dietary modifications that can help keep yeast in check. High-glycemic index foods such as sugar, white flour and white rice provide easily digestible material for the yeast, resulting in acute bloating, so these foods should be avoided. You can also take probiotics to help repopulate the gut with beneficial bacteria, but these must be of high quality since there is much variation in cell viability between products. Even with dietary modifications and probiotics, it is still often necessary to take antifungals such as fluconazole and nystatin to reduce the yeast cell count. Even these aren't always effective, as Candida albicans can form biofilms that make them resistant to antifungal medications (source).

Unfortunately, LD can cause the same gastrointestinal disorders listed above (source), thus fooling some victims into believing that they have candidiasis when in fact they don't.


Alternative remedies

There are many substances that folks who prefer alternative medicine claim will eliminate bacteria or yeast, or boost the immune system, or help detoxify the body. These claims are hotly debated. Doubters of alternative supplements cite:

Here are a few examples of alternative supplement health claims:

However, for every claim of a substance's effectiveness, there is a counterclaim. For example: Nevertheless, many patients insist that alternative supplements have aided in their recovery. It is often difficult to determine whether improvement in a patient's condition occurs because of an alternative supplement or it would have happened anyway. Furthermore, it can also be difficult to determine whether a substance has had any effect other than placebo.

Some people believe that rife machines can weaken or kill Bb by exposing them to certain electromagnetic frequencies. Again, it is difficult to tell whether these claims are true.

In any case, it is important that sufferers not rely on alternative treatments alone. Bb and Bartonella are elusive, insidious invaders that need proper medical treatment. Alternative supplements usually do not interfere with conventional treatment, but if a patient forgoes conventional treatment because he/she believes that alternative treatment is the answer, that can be dangerous.

Alternative supplements are not as tightly regulated as pharmaceuticals are. As a result, some do not contain what their labels claim they contain (source). Additionally, it is known that these products sometimes contain harmful substances such as heavy metals (source1 source2).

Some alternative supplements are sold in "homeopathic" concentrations. Homeopathic preparations are highly diluted substances. The idea in homeopathy is that just a tiny bit promotes healing. Less is more, if you will. This idea seems counterintuitive to many folks, causing it to be another area of debate. Homeopathic product labels usually denote potency using either a logarithmic X scale, where the number in front of the X denotes dilution by a power of 10; or a logarithmic C scale, where the number in front of the C denotes dilution by a power of 100. For example, 2X is one part in 102, or a 1% solution. 3X is one part in 103, or a 0.1% solution, and this is actually considered by many people to be a higher potency than 2X (remember, less is more). This idea is sometimes taken to such extremes that the dilution makes it improbable that the product contains even a single molecule of the ingredient. For example, a 60X (30C) product such as this one would have to be dissolved in 1060 other molecules. That would require a container more than 30 billion times the size of the Earth. Another example is a supposed flu medication called Oscillococcinum. It is a 400X (200C) dilution of duck liver. That's 1 part in 10400. There are only 1080 atoms in the known universe. Thus, 10320 more universes would be required for there to be the slightest chance that all the Oscillococcinum on Earth contains even one molecule of duck liver. Homeopaths claim that molecules of a particular substance leave an "imprint" in the dilution that causes a healing effect on the body even in the absence of the substance itself, but available evidence does not support efficacy beyond placebo (source).

Since the area of alternative medicine is so hotly debated, my (amateur) advice to any vector-borne illness victim is to take only those alternative supplements that are prescribed by a VBILMD; don't self-medicate based on the word of a website or someone working the register at a health food store.


Adjunctive substances and treatments

This is not to say that Western medicine is the only treatment for LD, bartonellosis, or any other disease. While Western medicines might kill pathogens, unconventional substances or treatments can provide adjunctive support to help the body heal.

Boluoke® contains a fibrin-dissolving enzyme called lumbrokinase, which is extracted from two species of earthworm (Lumbricus rubellus and Eisenia fetida). Earthworm has been used in Eastern medicine for many centuries to treat circulatory problems. Since Bb and Bartonella cause endothelial inflammation that can lead to fibrin deposits that cause hypoperfusion, lumbrokinase can reverse the process and restore normal nutrient and oxygen delivery by dissolving those fibrin deposits. It might also reverse atherosclerosis. Another way in which it can be helpful is in dissolving the fibrin coating that Bb uses to evade immune recognition. Lumbrokinase has been thoroughly tested and is deemed safe. The main side effect is that it inhibits adhesion molecules on platelets, which can cause cuts to bleed more than usual.

Hyperbaric oxygen therapy (HBOT), which is the medical use of oxygen at greater than normal atmospheric pressure, can be used as a possible way to help the brain recover. Cerebral hypoperfusion might stun, but not kill, brain cells, and HBOT might stimulate them back to normal functioning. However, it is not wise to give HBOT to patients before they are bacteria-free because inflamed tissues can be further damaged by the elevated pressure of HBOT. As for whether HBOT can actually kill pathogens, this is a matter of debate. The theory is that Bb is a microaerophile, so it cannot survive HBOT's increased concentration of oxygen, but the reality is that not all patients subjected to HBOT have improved, and even those who do improve require several treatments. HBOT is inconvenient, expensive, and often not covered by insurance.

Digesta Guard® is a combination of many strains of Lactobacillus and Bifidobacterium bacteria. It is supposedly better than store brands at replacing beneficial gut bacteria that are killed by antibiotics.

Chronic infections can severely limit the body's ability to remove toxic metals such as lead and mercury (I don't have information on the specific mechanism by which this occurs). Additionally, antibiotics can inhibit mercury excretion (source). Chelation therapy can help remove toxic metals. There are several chelating agents such as EDTA, DMSA and DMPS. Intravenous chelation has been proven to reduce blood levels of certain toxic metals, but the effectiveness of oral chelation is hotly debated. Regardless of effectiveness, chelating agents are apparently safe to use (source1 source2 source3). However, they can redistribute rather than eliminate toxic metals (source), as well as bind and remove essential minerals such as copper, manganese, molybdenum, iron and zinc. Additionally, EDTA can combine with iron to have toxic effects (source).

Another possible chelating agent is a type of zeolite called clinoptilolite. It is sold in both powder and liquid forms. There is much debate over which form is better, but neither form has been proven effective in clinical studies.

Vitamin and mineral deficiencies are common in Lyme disease and bartonellosis. These deficiancies may be indirectly caused. For example, these infections can cause elevated lead levels, and lead impairs calcium and vitamin D metabolism (source). A daily multivitamin is a good idea. Magnesium and vitamins B12 and D are often particularly low, so high doses of these might be needed. Blood tests to uncover vitamin and mineral deficiencies should be done so that the patient can take the proper supplements. (If taking calcium, note that most calcium supplements contain small amounts of lead. Calcium carbonate contains less lead than dolomite and oyster shell, so read supplements' fine print.)

Anti-oxidants such as N-acetylcysteine, alpha-lipoic acid, selenium, etc might provide general health benefits and therefore help support the Lyme/bartonellosis patient. Vitamins C and E act in synergy with some anti-oxidants to boost their power.

Omega-3 supplements such as fish oil and flaxseed oil are beneficial because they help reduce inflammation and they are essential nutrients that are often lacking in the average diet.

Inflammation can also be reduced by other dietary methods. For example, raw garlic (whose anti-inflammatory component is allicin) and most teas (which contain catechins) are two beneficial and readily available substances (source).

Ornithine might aid the body in eliminating ammonia (source1 source2), but then again it might not (source).

GABA supplements might improve mood and/or sleep for some patients, but this is controversial since GABA does not cross the blood-brain barrier (source).

Drinking lots of water will help the body flush out toxins.

Sometimes baby aspirin (80 mg) is prescribed as an anticoagulant.

Plenty of rest is necessary when undergoing LD or bartonellosis treatment. These diseases wreak havoc on the body, and a lot of energy is needed for the body to heal. Tobacco and alcohol are to be avoided. (source)

Exercise is recommended in order to raise oxygen delivery to hypoperfused tissues. This does not have to be vigorous exercise. In fact, patients should not push themselves beyond their comfort zone because inflamed tissues can be further damaged by overwork.


Who should get tested?

It is imperative that anyone who experiences unexplained muscle/joint aches, fatigue, "fibromyalgia", "chronic fatigue syndrome", excessive irritability, headaches, abdominal pain, etc seek help, and to get that help from doctors who are knowledgeable about vector-borne illnesses. Remember, these symptoms are not necessarily normal effects of aging, and the longer the bacteria causing them go undetected and untreated, the more damage they will cause and the longer must be the duration of treatment.


Where do I go for help?

There is a great VBILMD in Rockville Maryland, but for some reason he doesn't want to be mentioned on this website. One good resource for finding a good VBILMD is here. A few Maryland doctors are listed here. A Google search will help you find VBILMDs and discussion groups pertaining to your particular disease(s) where you can ask forum members if they know of a good VBILMD.

Psychiatric help is available for sufferers. Until the pathogens are eliminated and the brain can heal, patients can be treated for their psychological disorders. However, not just any psychiatrist will necessarily be able to provide proper treatment, because merely prescribing antidepressants for pathogenically caused psychological problems can be ineffective or even harmful. Certain psychiatrists are educated in vector-borne illnesses and can provide appropriate treatment. Again, a Google search might be of help.

You might have to pay out-of-pocket for good medical help. It is sad but true that insurance companies are driven by profit, not your health. It is in their interest to ignore or even deny the existence of certain diseases. Insurance panels base your health decisions on their profit motive, not on what will help you get well. Furthermore, the people who make these decisions usually aren't even doctors. Some patients have had the funding for their antibiotics cut off in the middle of treatment because their insurance providers deemed the antibiotics to be "unnecessary". Some VBILMDs do not take insurance because treating an illness that insurers object to can have adverse consequences. However, there is hope as legislation is starting to be passed that protects doctors.

The bottom line is that you are ultimately responsible for your own health. If your insurance company is denying you needed treatment, then either find another insurer or pay for treatment yourself. If your doctor seems to be ignorant about vector-borne illnesses, then find a better doctor. You owe it to yourself to find the best treatment possible and not passively accept defeat.

Veterinarians and doctors must work together to combat vector-borne illnesses. Veterinarians have a good amount of experience in this area since animals tend to remain outdoors longer than humans and hence are more prone to being infected.

We are lucky to live in this era of information and medicine, when so many previously untreatable ailments are now treatable. Until recently sufferers of advanced LD and bartonellosis were not so lucky, but their luck is now turning around.


Further reading and resources

When to Suspect Lyme (alternative link here)

Novel Diagnosis of Lyme Disease: Potential for CAM Intervention

Chronic Lyme Disease and Co-infections: Clinical Overview

Practice Guidelines for the Treatment of Lyme Disease

Healing Lyme Disease: An Integrated Approach to Curing Chronic Infection

Long-Term Inflammation in Lyme Borreliosis

What Every Primary Care Physician Should Know About Lyme Disease

Lyme Toxins the Primary Cause of Your Symptoms

Hemagglutination and Proteoglycan Binding by the Lyme Disease Spirochete, Borrelia burgdorferi

Ticks and Biting Insects Infected with the Etiologic Agent of Lyme Disease, Borrelia burgdorferi

When a Complement is not a Compliment: The Role of C3a and C4a Complement Proteins in Chronic Lyme Disease

Advanced Topics in Lyme Disease

The Marshall Protocol

Psychiatric Lyme Disease

The Psychotropic Management of Late-Stage Lyme and Associated Diseases

Lyme disease statistics by state

An Overview of Bartonella vinsonii subspecies berkhoffii Infection in Dogs

Bartonellosis: Veterinary and Human Implications

Bartonella sp. Bacteremia in Patients with Neurological and Neurocognitive Dysfunction

Ecological fitness and strategies of adaptation of Bartonella species to their hosts and vectors

Bartonella Infection in Animals: Carriership, Reservoir Potential, Pathogenicity, and Zoonotic Potential for Human Infection

Recommendations for Treatment of Human Infections Caused by Bartonella Species

Molecular and Cellular Basis of the Internalization of Bartonella henselae by Human Endothelial Cells

Entry of Bartonella bacilliformis into Erythrocytes

The World’s Top Stealth Bug Ends Marriages, Friendships and Jobs

Bartonella bacilliformis: Molecular Mechanisms of Invasion

Molecular and Cellular Basis of Bartonella Pathogenesis

Potential for Tick-borne Bartonelloses

Bacteremia in Patients with Neurological and Neurocognitive Dysfunction

Potential Transmission of Bartonella Species by Ticks (212 pages) (Shortened version in Word format)

Bartonella spp. as Emerging Human Pathogens

Bartonella Infection in Animals: Carriership, Reservoir Potential, Pathogenicity, and Zoonotic Potential for Human Infection

Infection-associated type IV secretion systems of Bartonella and their diverse roles in host cell interaction

Invasion and Persistent Intracellular Colonization of Erythrocytes: A Unique Parasitic Strategy of the Emerging Pathogen Bartonella

Natural History of Bartonella Infections

Bartonella: new explanations for old diseases

Bartonellosis: An emerging and potentially hidden epidemic?

Ignore Bartonella and Die - Trivializing Bartonella is Like Ignoring TNT

Bartonella quintana Lipopolysaccharide Is a Natural Antagonist of Toll-Like Receptor 4

An Infection Can Change Your Personality -- There's Plenty of Proof

International Lyme And Associated Diseases Society

NC State University College of Veterinary Medicine

Lyme Disease Research Foundation of Maryland

Lyme and Tick-Borne Diseases Research Center

A Complete Guide to Testing

Candida Albicans Overgrowth

Candida and Gut Dysbiosis

Candidiasis

Fungal Biofilms and Drug Resistance

Neuroprotection by minocycline facilitates significant recovery from spinal cord injury in mice

Minocycline, a Tetracycline Derivative, Is Neuroprotective against Excitotoxicity by Inhibiting Activation and Proliferation of Microglia

Minocycline Provides Neuroprotection Against N-Methyl-D-aspartate Neurotoxicity by Inhibiting Microglia

Purification and Characterization of Six Fibrinolytic Serine-Proteases from Earthworm Lumbricus rubellus

Reducing Inflammation With Diet and Supplements: The Story of Eicosanoid Inhibition

Tick Management Handbook

United States Department of Agriculture Northeast Area-Wide Tick Control Project: History and Protocol

United States Department of Agriculture’s Northeast Area-Wide Tick Control Project: Summary and Conclusions

The Impact of 4-Poster Deer Self-Treatment Devices at Three Locations in Maryland

Evaluation of the United States Department of Agriculture Northeast Area-Wide Tick Control Project by Meta-Analysis

Sustained Control of Gibson Island, Maryland, Populations of Ixodes scapularis and Amblyomma americanum (Acari: Ixodidae) by Community-Administered 4-Poster Deer Self-Treatment Bait Stations

Acaricidal Treatment of White-Tailed Deer to Control Ixodes scapularis (Acari: Ixodidae) in a New York Lyme Disease-Endemic Community

Effects of Tick Control by Acaricide Self-Treatment of White-Tailed Deer on Host-Seeking Tick Infection Prevalence and Entomologic Risk for Ixodes scapularis-Borne Pathogens

Topical Treatment of White-Tailed Deer with an Acaricide for the Control of Ixodes scapularis (Acari: Ixodidae) in a Connecticut Lyme Borreliosis Hyperendemic Community


As stated previously, the author has no medical training, nor does he purport to offer better medical information than that offered by medical professionals. The purpose of the information on this site is to inform, but its accuracy cannot be ascertained.

Comments? Suggestions? E-mail lymebartonellosis@yahoo.com

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