Why is it necessary for  the chronically ill patient to keep a detailed symptom diary?
by Marie Kroun. MD - 2010

In order to judge if the patient suffers from a currently active Borrelia infection and/or other co-infections, the doctor will need the patient to write down a very detailed disease history, including details on the risk of or known exposure to tickbite or to other bloodsuckers, travel history (previous possible or known exposure to "exotic" infections? - some malaria forms may recrudesce years after the primary infection), if the patient has given blood or has received blood (since the subject is blood infections some of them may be transmited by blood transfusion for certain, for instance Babesia), plus the patient must deliver necessary data for evaluation of any previous test result (photocopies of original test results, doctors papers)
- this is both in order to check if other explanations / diseases for symptoms has already been evaluated for and ruled out or treated for, and for evaluating if previous test results have pointed to exposure to Borrelia and/or other infections - this tells about what has been in the past 
- but the doctor will also need an overview over the current symptomatology and severity / degree of disability, to judge the need for treatment, and which treatment might help the patient best.

The current symptomatology can be visualized on symptom scores and log curves via the Excel symptomdiary (english & danish version), which is a free download and may be used by any chronically ill patient to keep track of his/her symptoms / treatment result, provided the copyright is not violated by changing the diary, except as advised in the "how to use" description.
After a while (1-4 months) the symptom curves may display a recurrent relapse pattern suggesting the patient could be suffering from a currently active Borrelia infection, so the cyclicity can be taken into consideration for when is the best time to sample blood for direct detection of Borrelia spirochetes!
- to understand why that is, some scientific background information of spirochetes and their alternative forms may be needed, see http://lymerick.net/MK-videomicroscopy.html

The main observation was that the characteristic Borrelia relapse patterns probably reflects the age of the cysts, since Brorson's found that young Borrelia cysts produced new "baby" spirochetes in about 9 days (clinically 6-14 days), while old cysts took about 4 weeks (clinically 3-6 weeks) to reconvert to spirochetes.
Illustrative relapse pattern curves, but only over total score are shown below, but in the diary are also curves per individual symptom, and sum per organ system 
- so it is possible quickly to see if and how individual symptoms develops / swings over time during ongoing flare and which symptoms eventually swings together or develop in series over days ...

Burrascano was the first to note the monthly relapse pattern characteristic of Borrelia burgdorferi infection during antibiotic treament, and found that there was a high risk of quick big relapse, if the patient stopped the antibiotic treament as long as there still was a noticeable flare cycle, so he recommends to treat Borrelia infection initially for at least 4 weeks - in order to break a whole lifecycle - and to continue treatment until the flare cyclicity ceases
- see his latest guidelines at ILADS website: http://ilads.org/lyme_disease/treatment_guidelines.html
Burrascano's important observation was supported by findings in my long term follow-up study on patients enrolled which displayed a current activity / relapse cycle on their symptom diary, and who came out positive on direct fluorescent specific immune stain for Borrelia burgdorferi.

The symptomdiary / relapse pattern can be used to spot when is the optimal time for sampling of blood for microscopy (and for culture and PCR), since spirochetes are especially found in the blood within the first 24 hours after the start of a new symptom flare-up. 
The chance of finding spirochetes by microscopy (or catching some of them in the sample for culture, PCR) in a randomly taken blood sample, i.e. when the investigator can NOT take the individual patients relapse cycle into consideration, is at best around 10% (1/10) in a "weekly" relapse cycle, but only 3% (1/30) in a monthly relapse cycle, i.e. much tedious blood microscopy time / expensive materials (BSK-H, Bb-specific antibodies for direct immune stain, primer for PCR) can easily be wasted in "not finding", if the patient don't keep the Excel symptomdiary for at least one month (weekly cycle) to four months (monthly cycle); at least three relapses are needed in order to judge if there is regular and recurrent flare activity, so the blood investigation can be planned to when the next time a flare is supposed to set in.

The symptomdiary is very useful for getting the patient and the doctor good overview over a complex symptomatology and long term ongoing disease proces, no matter what the cause(s) is/are, since it can be used to evaluate and follow any chronic disease long term, and be used for documenting effect / side effects of any tried intervention, whether it is traditional medicine or alternative. A patient doing long term diary daily also shows very good compliance. Only very compliant patients will be suitable for participating in research studies on testing and treatment for infections.    

The visual analog symptom scale used in MKs symptomdiary resembles NYHAs 4 degrees classification of the disability in heart disease (minus 1), the scale is:
0: normal; patient do not need to write zero scores in diary, nothing is added to the total score if patients feels perfectly normal.
1: mild disease i.e. slight limitation of activity
2: moderate disease i.e. marked limitation of activity
3: severe disease i.e. debilitating/incapacitating symptoms even during rest.
However, it is very important that patients score each individual symptom in floating point values - at least gives half and quarter point-scores - otherwise the 4 point scale is not sensitive enough to show minor flare activity changes.

Now to some real-life Borrelia flare activity patterns:
More information on the 33 first 'pilot' project participants overview here: http://lymerick.net/York2003/projpatients.pdf and Powerpoint-presentations: York2003-PPT, York2004-PPT (#11 and #24), Leicester2007-PPT i.e. case #49 and #50):

NOTE There are always 7 days between the shown dates on the X-axis, i.e. one week. The left Y-axis is the symptom score and the right Y-axis may show antibiotic dose levels (later version of the diary program).

NOTE also that counting the daily/nightly number of urinations and defecations gives around 10 point/die normally as part of the total score; so be aware if the patient keeps track of these or not! - since it is not possible to reach a ZERO total score, if the patient IS keeping track of the number of urinations and defecations; daily and nightly urinations should be counted because some patients have signs of reduced antidiuretic hormone (ADH or vasopressin) secretion, especially noticeable during night time where ADH should peek in order to reduce urine excretion in order not to disturb the patients night sleep; lack of ADH excretion during night may lead to excessive nightly (and daily) urinations, which again lead to increased thirst; so be aware of an important objective sign: if the patient always carries a water bottle and drinks from it and refill it often, and immediately needs to spot where the toilet is, because of need for frequent urinations, there could be such a problem!
... in that case it is important to measure the amount of urine production over time and note when urinations occur / and the amount of urine produced during both day and night, at least for some days, including during flare-up time, because patients report such symptoms especially during neuroflare time! ~ if very high urine excretion can not be reduced (urine concentration can be measured, osmolality) by reducing the water intake (Addis fluid deprivation test), it may be true diabetes insipidus and investigation of other hypophysis hormones may be needed also. If there is lack of ADH and frequent nightly urinations desturbing the patients night sleep, leading to fatigue, the patient may be helped by nasal vasopressin spray (Minurin) at bedtime, just like the bed-wetting smaller children, where the nightly ADH peak is not ocurring. While children usually don't wake up on urination reflex and wet their beds during sleep, adults often will wake up on the urge urination reflex and go to the toilet; severe debilitating fatigue during daytime may be improved / prevented just by taking away the patients urge to pee and thus wake up 2-3 times every night!  
The number of defecations and the "quality" of the stool must be noted because most pt. will develop some degree of diarrhea as adverse effect during antibiotic treatment, and because patient may have "irritable bowel" symptoms as part of their disease picture. Borrelia burgdorferi and alike spirochetes has been detected in biopsies from the bowel system: http://lymerick.net/Gastrointestinal-spirochetosis.htm 

Borrelia-monthly-cycle

#11 (above) showed a monthly relapse cycle, with high scores during flares, but low/normal in between flares ..

#24 (below) shows one month diary with weekly cycle before direct fluorescent antibody test for Borrelia burgdorferi, which came out positive, plus pt. also had ringformed babesia-like parasites in red blood cells; then shows the start of antibiotic treatment  (metronidazole and azithromycin); note the Herxheimer-like worsening for a few days into the first treatment week and thereafter gradual improvement, as usually seen during the first 3 months of antibiotic treatment especially in patients with Borrelia, but without sign of co-infections; co-infections may fluctuate in a different pattern, overlying cycles blur the curves and if the co-infection is not found / not targeted by antibiotic treatment, the course may be slow / improvement much less than expected - so look out for / test for co-infection, if the patient does not respond as expected on antibiotic treatment known to target Borrelia, but not intracellular co-infections, like penicillin, amoxycillin, ceftriaxone (cell-wall antibiotics) ..
Borrelia-weekly-cycle+improvement on antibiotic

Some patients may experience a rather long "2nd Herxheimer"-like worsening reaction, possibly those with a very high load of hitherto dormant Borrelia cysts on stock in tissues, that dependent on the age of the cysts (?) enter growth cycle in a more or less steady flow, until all the younger cysts have been cleared and only older cysts are left to give monthly relapse pattern.
This is illustrated in #49:
0049-symptom-log.jpg

Observations from the project showed that often a borrelia flare starts with a rectal temperature drop of 0.5-1 ºC down to 36.0 ºC or even below - usually in the late afternoon, compared to that particular pt. normally has 37.0-37.5 ºC at that time of the afternoon, when measured outside flare time and compared to the normal temp. range measured in rectum. Must be measured with same thermometer and this must be checked againt other thermometers for a correct and realiable measure. Oral, ear or skin measurements is NOT reliable enough to measure the small temperature variations!
In the danish project participants diaries their rectal temp. usually lies between 36.5 to 37.5 ºC outside flare time, lower in morning, higher in afternoon and evening; during female ovulation and premenstrual phase plus 0.5 ºC, but there may be individual variations.

Concurrent with the temp. drop the patient often feel chilly and malaise, often have to go to bed with clothes on to get warm, extremities may feel cold and have a bluish color - cyanosis, eventually as livedo reticularis - i.e. signs of uneven / reduced circulation in the skin, and the patient may also begin to have certain "start of neuroflare" markers - usually the patient has some characteristic sensory disturbances or pains, brainfog, blurred vision / reduced contrast sensitivty (this can be objectively measured by FACT or VCS online); within 6-12 hours after start the patient feel like getting a fever and temp. may have been raised by 1-2 ºC, but due to the previous temp. drop, the pt. temp. usually only reach the subfebrile area (37.5-38.0 ºC).
 
Around 2-3 days after start of flare symptoms are usually dominated by "reactive symptoms" possibly due to reduced vascular blood flow / vasculitic problems, signs are:
 The histopathological Hallmark of Borrelia infection is perivascular infiltration with chronic inflammatory cells, probably elicited by precipitation of circulating (IgG) immunecomplexes, the amount of which was shown to fluctuate with the symptomatic relapses of Borrelia in joints;  damage of endothelial cells may also be mediated by TNF/TNF-alfa signals induction of programmed cell death, apoptosis?
In order to combat intracellular infections the host immune system need to kill all his/her own infected cells, preferably at a time when the infectious agents are not mature, while the infectious agents on the other hand may try to hold the host cell breakdown until they are mature and ready to infect neighbour host cells; some of the intracellular microbes - that are associated with chronic persistent intracellular infection - may interfere with the host cell response to TNF apoptosis signal by activating NFkB delaying the host cell breakdown?  
Also Borrelia can exist both extracellularly and intracellularly and may survive intracellularly at least for a while during treatment with cell-wall antibiotics like penicillin and ceftriaxone - http://lymerick.net/Bb-intracellular.htm - that is probably why treatment only with IV ceftriaxone and penicillin may fail, and why some doctors recommend to follow-up after IV treatment with antibiotic treatment that can penetrate better into deeper tissues and intracellularly than the "penicillins", i.e. with drugs like the tetracyclines (tetracyclin, doxycyclin, minocyclin), the (3th and 4th generation) makrolides (clarithromycin, azithromycin) and metronidazol (which may both penetrate well to tissues (cross blood-brain barrier) and may be able to break the spirochete-cyst-spirochete life cycle (Brorson on metronidazole PMID: 10379684) ...
TNF can be measured increased during Jarisch-Herxheimer reaction, and during Borrelia activity; Shoemaker found that high TNF-alfa correlated with reduced retinal bloodflow (measured by Heidelberg doppler flowmeter) and with reduced Functional Acuity Contrast Test (FACT) in row C-D-E, see http://chronicneurotoxins.com and http://biotoxin.info ... read more about FACT at http://contrastsensitivity.net
Shoemaker measures a lot of cytokines and hormones like MSH in his research, and was the first to show that C3a and C4a (complement split products) can be raised in borrelia infection as early as within 96 hours after an infecting tickbite!

Result of attack on vascular lining, leading to inflammation and blood clotting (eventually thrombus formation leading to infarct) is reduced blood flow, which again can explain some of the most common symptoms of borrelia infection:
 Many proinflammatory markers can be measured and found increased in chronic inflammatory conditions; but unfortunately lack of access to laboratory methods / lack of money can prevent the thorough evaluation that chronically and complex ill  patients really need for getting a proper MEDICAL evalutation, at least before diagnosing psychiatric disease of unknown origin!
I get insight in papers and test results from many patients and thus have documentation enough for stating that many chronically ill patients have not been evaluated properly for inflammatory disease/infections, before their symptoms are being labelled "psychic" or "stress induced"; mostly patients only get "routine measures" and chronic inflammatory disease is outruled, when CRP and SR is not found elevated; these measures are often not elevated in chronic Borreliosis and other slow infections!
It puzzles me how doctors dare treat chronic inflammation like rheumatoid arthritis, inflammatory bowel disease etc. with anti-TNF drugs, without proper evaluation for infections and without ever measuring the by the treatment targeted TNF niveau before and during the anti-TNF treatment, which may have very severe adverse effects!?
How thorough chronically ill patients with variable multi-organ-system symptoms should be evaluated can be detucted from the Biotoxin pathways chart: http://www.biotoxin.info/images/BiotoxinPathway.pdf
- which also gives hints to treatment modalities for some of the common symptoms ... read short about Shoemaker's innovative work and his websites http://chronicneurotoxins.com http://biotoxin.info ...

Lyme borreliosis patients (and patients with other infections of the nervous system, most wellknown in syphilis) may have severe neuropsychological problems on top of physical disabilites or mental illness may even be the sole or major manifestation of their Lyme borreliosis; the neuropsychological problems are probably an effect of proinflammatory cytokines / interleukines which are raised as the hosts immune response to infection; cytokines can induce behavioural changes, for instance when cytokines are injected into animals (PDF); the animals express about the same "sickness behaviour" as does humans ... withdrawal from the flock (light and noise sensitivity makes it unbearble for the patient to be among a noisy crowd), anhedonia, aggression, anxiety, fatigue/lethargy, anorexia, sleep disorders  ...

Inflammation/cytokines can also result in hormonal changes for instance lead to reduced MSH - along with reduced ACTH hormone, lack of ACTH lead to less stimulation of the adrenal gland cells, i.e. reduced cortisol production, less ability to tolerate stress? ... reduced melatonin => sleep disorder, important for the seasonal / diurnal rythm ...
Robert Bransfield, psychiatrist and current president of ILADS (2010), have recently given very interesting presentation with lots of references on the subject of psychoimmunology, but this was too much to give you a review of here  ..
Indeed, neuro- psycho- endocrino- and immunology are always combined, are not separate functional entities, thus the division of doctors into different types of medical specialist does not fit the natural build / human functions very well, but has tended to create quite narrow-minded doctors, that focus within a very small area of their special interest in medicine.

Chronically ill people with multi-organ-system disease / symptoms need generalists that read science from many specialities, knows enough to understand the pathogenesis / can explain the disease symptoms, and who can test appropiately and who can treat all found infections and hormonal dysfunctions etc. - or at least the patient will need to consult a team build of INTERESTED people, who co-work on evaluation of these complex patients; since many (chronic) (intracellular) infections starts the very same immune responses leading to the same "unspecific" symptomatology, it is important to not only focus on "borrelia or not?", but think of all possible causes and evaluate the patient thoroughly, because treatment options differ depending on which infection(s) is/are involved in starting and maintaining the immune cascade reaction ...

It may be that some patients do not downregulate a raised proinflammation situation normally, and some patients have been found to express certain genetic markers, i.e. some of their own tissues / cells express antigens that are alike some microbial antigens - molecular / antigen mimicry - thus antibodies resulting after infection with certain microbe(s) may raise an inflammatory response, that can begin attacking self; read for instance PMID: 15695691  PDF... 
- and if the hosts own molecules / antigens alone - after the infectious agent(s) has been eradicated - can continue to stimulate continued formation of antibodies that continue to react with self antigens, the patient has developed an autoimmune disease!
Which genes are responsible, and why don't these patients downregulate inflammation normally and are more vulnerable to certain infections, that are the question wee need to find answers for!  ... thus persistent symptoms after antibiotic treament is not always due to persistently active infection, but persistent infection will of course also continue to induce continuous antibody formation, that may bind to the patients microbe antigen alike tissue antigens, and keep the inflammatory proces rolling.
 (Chronic) Borrelia patients may express elevated ANA, RF and other autoimmune markers, though usually not on a level high enough for diagnosing autoimmune diseases like lupus or rheumatoid arthrtis; moreover these measures can fluctuate with disease activity and normalize after improvement on antibiotic treatment. Such patients may have prolonged "reactive symptoms" much longer than do people who do not express alike genetic markers? 
We will never able to find out what makes some, but not all the (Borrelia) infected sick, unless we have access to lab tests and can evaluate each patient thoroughly - like dr. Shoemaker does - with all the most modern "state of the art" test methods! 

Doctors "art" is to be able to disciminate between causes and it is necessary to be able to discriminate, because treatment options / what will work best for the individual patient are very different, depending on the pathological mechanisms involved.
The most important question for the patient and the clinical doctor - who treat the patient - are then very important for the decision of which treatment:
 - the symptoms are alike, but the treatment is very different and making the wrong treatment choice may not only not help the patient, but may harm and even kill the patient, in case of severe immune depression is created by medical intervention, that fuels the underlying infection, which can fluorish whenever corticosteroid or other immune depressive treatment is not done under concurrent antibiotic treatment. There are published case reports and I've also personally seen patients, who - after primary Borreliosis apparently recovered well after antibiotic treatment or spontaneously, i.e. who for years were asymptomatic or only had had occasional "minor" flares, who was treated with high dose prednisolone or similar drugs due to suspected autoimmune disease due to found elevated measured of autoantibodies, who crashed totally after the corticosteroid treatment and from which Borrelia antigen then could be detected in their blood during the relapse by direct detection methods!
Therefore I recommend that "previous" Borreliosis patients should never be treated with corticoid steroids or other immune depressants, unless the patient also is treated prophylactically with antibiotic treatment, to prevent microbes from multiplying during time of severe immune depression!

Symptoms are elicited by the immune reactions raised every time a group of spirochetes enters blood circulation and get attacked by the immune system - i.e. the chronic Borrelia patient usually experience recurrent relapses coming at intervals. There can be longer latent periods with fewer symptoms, but patients are often not asymptomatic.
Every kill off of several spirochetes during treatment will elicit fierce immune reactions - including / induced by elevated TNF; the worsening reaction seen during treatment was named the Jarisch-Herxheimer reaction after the doctors describing the worsening reaction during syphilis treatment.
It is very important to tell the patient that a worsening reaction can be expected and is sign that spirochetes are being killed, i.e. that the treatment works, it is NOT A SIDE EFFFECT. Also when a patient does not "Herx"  at all, the treatment may not help in the longer run either, thus is indication for a re-evaluation, perhaps a change of treatment; the first Herx reaction can be very bad in high bacterial load, hence high bacterial kill, but can be reduced and be more tolerable by starting antibiotic treatment with low dose and wait increasing the dose until the reaction has worn off in usually a few to 5 days. Many patient explain a very abrupt "turn-off" of the Herx reaction, as switching the light of.  It is also necessary for chronically ill patients to understand that worsening reactions will occur every time a group of new spirochetes emerge from stock of hitherto dormant cyst forms entering growth, i.e. recurrent worsenings can be expected during treatment, just like in the untreated active disease pattern, until the stock of Borrelia cysts has emptiet itself.

Burrascano was the first to tell about this in his guidelines already back in beginning of the 1990ies. For unknown reason the second Herx is often the worst/longest (see #49 above), and usually starts around the 3-5 treatment week, and may last from a couple of weeks to 6 weeks or even longer, fluctuating on a high symptom level (often up to 75% of what the level was before treatment); the pt. who felt a very good improvement in week 2 and 3, and before the second Herx sets in, can get very disappointed and feel very depressed during the second worsening phase, think the treatment does not work after all, that bugs have already developed resistancy to the drug, or that (s)he has very bad side effects from the antibiotic treatment
- however, the stock of hitherto dormant cysts can only be reduced and finally emptied, whenever some of them enter growth phase, form new spirochetes, that wanders to the blood circulation and create complement cascade and cytokine storm and thus symptoms; unfortunately only active bacteria in growth can be hit by antibiotics, when the metabolic processes are active that antibiotics interfere with; some patients gets so depressed that they are in suicide risk during the Herx phases, especially if not having been prepared for the 2nd Herx in advance! - patients need much psychological support from their peers and a doctor, who knows all about this from experience, can say "others felt likewise bad for a while, so just hang in there, it will get better, but it may take up to 2-3 months to get through it".
After the 2nd Herx phase, most Borrelia infected patients usually stabilize on a lower lag-phase (50-100% symptom reduction compared with level before start of treatment) and then shifts to a monthly relapse cycle, relapses coming only from old cysts, in time - as the stock of growth-able cysts reduces - relapse tendency eventually fade away, less intensive and eventually longer intervals.
 
The first week Herx can often be avoided by starting low dose and gradually increase the antibiotic, but the second Herx - the younger cysts emptying phase (?) - unfortunately has to be tolerated; stopping or lowering the dose may increase risk of bacteria developing resistancy to the drug(s).

Herx'es are far worse on bactericidal antibiotics (killer drugs), less on bacteriostatic treatment (growth inhibitors), i.e. the Herx is sign that some bacteria is being killed giving waste product that trigger cytokine storm, i.e. that the drug(s) works, so it is actually a good sign! - a relatively long second Herx phase is illustrated above in curve from #49 in the 2007 Leicester, UK PowerPoint (cases #49 and #50).

Patients experiencing a very bad and very long 2nd Herxheimer reaction have usually been sick for years (> 2 years) before Borrelia diagnosis and treatment, and they may take long time to have lasting improvement and no more flares.
Monthly flare activity can continue for years, each giving a risk of big relapse (to the level as before antibiotic treatment or worse) if stopping the antibiotic treatment, at a time when the patients immune system alone can not suppress the new spirochetal growth sufficiently; tell the patient to count on it may take just as long to empty the stock of dormant cysts, as it has taken to fill the stock with them!

BUT #11 (first curve above) who was already on social security sick pension for a couple of years and used a wheelchair for severe "chronic fatigue syndrom" and could neither do much physically, nor mentally, before the diagnosis and treatment of Borrelia, plus sign of two co-infections (ringforms in red blood cells, and morulae-like / ehrlichia-like inclusions in white blood cells) - after above curve - still had flares, but at 3-6 monthly intervals until 2005, where she stopped the antibiotic treatment, which she only took during flare activity; she has had no flares needing antibiotics since. She could begin working for money part-time in 2005, has since taken a new education, as a dietist and is feeling great now - has a life that is worth living again!
The cure (we hope!) was not done solely by antibiotics, but also by the patients own focusing on her diet and other lifestyle factors.
We are what we eat! - it should not come to surprise to anybody that immune function may be hampered by lack of essential nutrients/wrong diet, by toxin overload (heavy metals like mercury for instance) and not the least by stress.

After years of chronic illness and reduced stamina, the body and mind need to be gradually retrained in order to regain better functionality, and learning to cope with having to live with lasting symptoms from permanent tissue damage also takes its psychological toll on the patient.

The danish society (social service) is - unfortunately IMO - putting very high pressure on very sick people to go to work despite illness; "the system" is not aware that it may actually hamper the healing process, stressing the patient so much and leaving no time nor energy for the patient to rebuild capabilities and learn to compensate for lost functional abilities. Time is needed after long term illness, but the society shut off the economic support often already after 12 months on sick-leave and demand the ill patient works, no matter how ill!
Recently a danish cancer patient on sickleave, who had a good job to get back to after treatment, was sent on "activation", as if the cancer disease was caused by a lack of motivation to work for a living?!

#49 (above) was very lucky that his brain infarct did not give him much brain functional defects; he clearly improved on the peroral treatment, yet his symptom level still reduced even more when he was put on IV ceftriaxone! - which he was at first denied by the ID hospital doctors, who did not believe in the test results from USA, nor do they want to believe in the existence of "chronic borreliosis" and usually says "there is no evidence that longer than 10-21 days treatment works better"
- but seing the curve from #49, I wonder if he would perhaps have improved faster and better, if the ID doc had NOT refused to treat him with IV ceftriaxone at first?
... it was another hospital department (dermatology) that around 6 months later gave him IV ceftriaxone treatment; he continues antibiotic treatment via GP (because pausing treatment make his symptoms increase); he has improved a lot, is usually normally functioning and working full time, but he still feels occasional very bad flares, thus dare not risk stopping the treatment, use it as relapse prophylaxis ... 

It is a huge stress factor to be chronically sick / relapsing, and then on top be "treated" by ignorant doctors, as if we are a bunch of crazy malingering hypochondriacs!
- at least we can see that our symptoms are influenced by the intermittent presence in our blood of some serpentine microscopic moving/swimming structures that should not be there
- when we know, because we can see and film the bugs presence in the blood during activity, that our suffering come from spirochetes cyclical acticity, not from "imagined demons" as they think
- we realize that antibiotic treatment is the most rational treatment ... but why do we have to fight so much for it?
All doctors have to obey the WMA International code of ethics :  "shall ... respect human life", "shall act in the patient's best interest when providing medical care.", "owe his/her patients complete loyalty and all the scientific resources available to him/her. ",  "shall be dedicated to providing competent medical service in full professional and moral independence, with compassion and respect for human dignity.", "respect the rights and preferences of patients" ... etc. - yet many doctors deny the chronically ill patient the right to try a treatment option that might help improve the condition - why?  .. it seems like Lord Nelson, who deliberately raised the telescope to his blind eye and stated "I really do not see the signal" ...

More project patients have had a very good outcome, that seem to last for years after stopping antibiotic treatment, but there is still room for further improvement!
- so the research work MUST BE CONTINUED :)
MONEY is needed for continued research, please donate money to http://daninfekt.dk - the KONTINGENT subpage tells the bank account information.

Ignorant doctors will be able to continue saying "there is no proof /evidence that longer term / different treatment works better"
- as long as patients trying longer term / different treatment regimens, does not register the effect of what they try, in the only manner that can be accepted by hesitant doctors
- prospective symptom score using a visual analog scale, combined with repeated blood evaluations for the eventual presence of spirochetes and other abnormal findings!
It need to be do in a way, so results can be published in a scientific journal, otherwise it does not count, will not be read by doctors, will not be taken into account!

ONLY PATIENTS WHO GET DIAGNOSED WITH CURRENTLY ACTIVE BORRELIA / SPIROCHETE INFECTION BY DIRECT DETECTION METHODS AND WHO ARE OFFERED "EXPERIMENTAL" TREATMENT, that differs from the normally recommended treatment, CAN SHOW THE WORLD HOW / IF THEIR SPECIALLY DESIGNED TREATMENT WORKS BETTER, BY SYSTEMATICALLY KEEPING TRACK OF THEIR SYMPTOMS (via a symptom diary of some sort, MK's Excel diary is a free download, so feel free to use it!), AND BY COMPARING SYMPTOMS WITH BLOOD MICROSCOPY ...

Frankly, I do not understand why is it so hard for certain doctors (especially neurologists, ID specialists and microbiologists) to accept that chronic / persisting borreliosis is a reality some patients have to live with! - when these doctors know / accept that herpes, CMV, HIV, tuberculosis, lepra and more infections can be chronic / lifelong persistent in nature and that sick people with such infections need treatment for many months to years, HIV even for the rest of the infected patients lifetime, in order to suppress the viral growth?!  ... some immune depressed Borrelia patients is apparently in the same situation as HIV patients, but usually can't get the antibiotic treament they need in order to suppress the microbial growth and be able to have a better life.
Why do certain doctors ignore (no ref. / no discussion) in their articles on Borrelia .. the many - since 1989 - reported culture,microscopy and PCR verified cases of persistent / chronic Borrelia infections?

As long as they continue to IGNORE THE REALITY THAT MANY SICK PATIENTS HAVE TO LIVE WITH, patients will need to help interested researchers collect much more data as illustrated here ...
Several hundreds, if not thousands of patients, if possible ... otherwise the unbeliveing doctors will continue to reject findings by saying "well, it is just a few exceptional case reports".
I wonder how many successful case stories and how many cases of by direct detection modes diagnosed chronic (seronegative) borrelia (relapsed) cases, it will take to turn "the common medical opinion"?

The Excel symptom diary has helped us spot symptoms and exposure reactions, which the doctor might not have thought of asking the patient for, and which the patient would not spontaneously have told they have - because many symptoms are mentioned in the chart which the patient will have to think over and report, if present -- this often shines a new light on the case story / gives a broader perspective, and overview;  most diseases are probably multicausal, and if not all contributing causes are found and addressed treatment wise, the patient may not heal / may not get much better ..   

However, there are many drawbacks with the Excel symptom diary, mainly people will have to understand how a spreadsheet program works and must enter all data correctly for the curve drawing to work (comma is used as decimal point in DK, i.e. 2.3 is consided to be text by the danish Excel spreadsheet program version, no curve can be drawn from text that look like numbers! - thus patients must learn to use the danish number 2,3, with comma as decimal point indicator insterad - not easy for brainfoggy people with short term memory problems   ...
More tricky problems like this, unfortunately make the Excel symptom-diary too difficult to use for very brainfoggy people, so many give up using the diary :(

MK has a dream of patients instead of entering their score data into a spreadsheet, which they must send a copy of to MK at intervals, instead could login to an online MySql database and enter their data from any computer or even by a smart phone. Just like MK can login to and search the LymeRICK article database and even open full text PDF articles and read and edit entries via SE Xperia X10 - nice ;)

The database tables, login pages and data enter system can be easily made with PhpRunner (which was used to create the online LymeRICK TBI article database), but a program (MySql-Php in order to be compatible with the PhpFusion website) is needed to retrieve the symptomdata, do all the calculations and draw curves over everything, just like in the spreadsheet program does - and if possible also make summed up statistics for all registered patients on the fly, by pressing button.
Please contact the webmaster, at http://daninfekt.dk - if you can help program this in Php!