Lyme Disease « 3/3 « Cynthia M Chase Cynthia M Chase

Lyme Disease Rehabilitation – Last installment

This is the final chapter reviewing the amazing work of Dr. Joseph J. Burrascano Jr., M.D. This one is about Lyme Disease Rehabilitation.

Unless an exercise program is added, antibiotic treatment will not produce complete remission for the patient with chronic Lyme disease. Clear and simple. That having been said, I understand personally how hard it is to move when you feel exhausted and in pain. Yet, unless this ennui is challenged a more complete “healing” cannot occur.

Theories abound as to how this works: exercise may provide sufficient oxygenation to promote organism die-off, and then again, it may be the increase in core body temperature which promotes killing off the Bb, in combination with the antibiotics. A third factor may be the mobilization of lymph fluids which enhance immune functioning.

There is evidence that regular exercise promotes T-cell function. However, aerobic exercise depresses t-cell functioning for 12 to 24+ hours, then rebounds. Aerobics is therefore not recommended.

Goal: intermittent exercise alternating with rest and quality sleep. In the beginning if you are severely ill it may be effective to exercise one day then rest 3 to 5 days, reducing the days of rest as stamina increases. It is recommended that you do not exercise two days in a row in the beginning!

In severe cases the protocol may begin with physical therapy involving heat, massage, ultrasound and simple range of motion exercises. Ice and electrical stimulation should not be used!

The program should evolve into a graduated, ultimately strenuous program consisting of a specific regimen of not-aerobic conditioning. An hour of gentle exercise, hot bath or shower and a nap until stamina returns.

A cardiac stress test may be neessary prior to instituting the protocol to ensure safty.

I hope you found this series helpful. If you have any comments, please feel free to leave them in the comment section.

Blessings,

Cynthia

Nurtitional Supplements

Sixth Installment

Important News!

For patients with chronic illness such as Lyme and Chronic Fatigue, studies have shown that some symptoms are “related to cellular damage and deficiencies in certain essential nutrients.” What this means is that this opens the pathway to other forms of treatment to reduce and eliminate chronic Lyme disease symptoms! Dr. Burascanno reports that these studies we conducted double-blinded and placebo controlled and in one case with direct examination of biopsy specimens. These studies have given us a grounded understanding of supplements which may be helpful.

Use a pill organizer!

With multiple medications and supplements that need to be taken at different times of the day it is critical to organize to promote compliance.

Use Quality Supplements

What this means is that you are urged to get what is called “pharmaceutical grade” supplements so you can be sure of getting active, regulated amounts of the active ingredients that you seek. Among others, Dr. Burrascano has found that Pharmanex, Researched Nutritionals and Nature Made products fit this criteria. See Dr. Burascanno’s website for specifics as to how to order from these companies on line.

Basic Daily Regimen

In order of importance:

Probiotics (required)

Products such as kefir, acidophilis and bifidis (the refrigerated ones tend to maintain high potency) and yogurt are recommended. These healthy bacteria repopulate the intestinal tract to make up for the mass killing-off of biological organisms from the anti-biotics used to treat the spirochetes.

Multi-vitamin (required)

Dr. Burascanno recommends a product called Life Pac through Pharmanex. This product is pharmaceutical grade and USP certified and has been rigorously tested. They have developed specific protocols depending on your age and sex.

CO-Q10 (required, but do not take when on atovaquone (which is Mepron,Malarone).

Deficiencies in this enzyme have been shown to relate to poor function of the heart, limitations of stamina, gum disease and poor resistance to infections. Heart biopsy studies actually indicate that many Lyme patients should take between 300 to 400 daily. Dr. Burascanno recommends this product from Researched Nutritionals.

Alpha-Lipoic Acid (required)

This facilitates the entry of CoQ10 into the mitochondria. This is so important, otherwise CoQ10 is not as effective. Dose is 300 mg twice daily.

Vitamin B (required)

Clinical studies have demonstrated that supplemental vitamin B in infections with Borellia help heal neurological symptoms. The recommendation is to take one 50 mg B-complex daily, or if neuropathy is severe, a second one can be taken later in the day.

Magnesium (required)

This supplement is very important as a muscle relaxant: it is very helpful for tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help with energy level and cognition. Dr. Burascanno specifically recommends magnesium L-lactate dehydrate (Mag-tab SR sold by Niche Pharmaceuticals – 1800-677-0355 and is available at Wal-mart). Isn’t it helpful to know that we can take charge of parts of our care to enhance the support provided by our medical team!

Essential Fatty Acids (required)

When taken regularly studies have shown that EFA’s statistically improve fatigue, aches, weakness, vertigo, dizziness, memory, concentration and depression.

There are two broad classes of essential fatty acids:

One: GLA – Omega-6 oils derived from plants:

It is recommended that you use a refrigerated liquid product of mixed omega oils obtained from the local health food store. Take one to two tablespoons daily or it can be mixed with food or put on salads.

Two: EPA (Omega-3 oils) which are derived from fish. Dr. Burascanno recommends Marine Omega by Pharmanex; take 4 daily on a full stomach. This is recommended because it is made from krill- the plankton which fish eat – (not from the fish itself) and is certified to be free of any measurable amounts of heavy metals and organic toxins.

NT-Factor

This is a product that addresses the mitochondrial damage thought to underlie the metabolic dysfunction associated with chronic diseases which manifest as fatigue and neurologic dysfunction! This is huge, if it works. the amazing thing is that Dr. Burascanno touts this as “the single most reliable agent I have found that can give noticeably increased energy levels.” Effects may be noted within two weeks, especially if combined with supplements known to support neurological function (below.)

Optional Supplements for special Circumstances:

A. For Neurologic Symptoms

Dr. Burascanno has three goals here: 1. Supply the metabolic needs, 2. replenish what has become depleted and 3. protect the neurons and their supportive cells.

Acetyl-L Carnitine is taken along with SAM-e. This combo can result in noticeable gains in short term memory, mood and cognition. This is good news for chronic Lyme patients suffering from these symptoms. Doses: 1500-2000 mg. Positive results may appear in as little as two to three weeks.
Methylcobalamin (methyl B-12)

This a prescription drug derived from vitamin B-12 and can help heal the central and peripheral nervous system, improve immune function and help to restore more normal sleeping patterns. It must be taken by injection for absorption and the dose in usually 25 mg (l c.c.) daily for 3 to 6 months. Long term studies have not shown any side-effects. There are special directives that apply to this prescription so go to Dr. Burascanno’s site for details. It must be ordered from a special compounding pharmacy.

Green Tea

You do not need a prescription for this product! Green teas is very high in anti-oxidants. For anyone with “degenerative changes to the central nervous system” this is a must. At least four cups daily are needed to reap the benefit. Dr. Burascanno recommends decaffeinated green tea of good quality.

Cordymax

This herb is from Tibet and it has been studied clinically; results have shown that it improves stamina, fatigue, and enhances lung and antioxidant function. It does something else that is so important in cases of neurological Lyme: it raises the “superoxide dismutase levels.” In effect this prevents lesions in the central nervous system. Dr. Burascanno raves: “The positive effects can be dramatic.” It is recommended that the product should be used long term to maintain progress and that it should be USP (as in the Pharmanex product CordyMax.”)

Citicholine

This supplement has been well studied and the studies support its use for improving cognition, especially memory when used long term. Dose is 500 to 1000 twice a day.

B. For Immune Support

This product is made from the Reishi mushroom and in clinical studies it has been shown to augment the function of what is called the Natural Killer Cells and macrophages. If your CD-57 count is less than 60 it is recommended that you take four a day (available only at Phamanex.)
Transfer Factors are the body’s natural signals meant to activate the pathogen-killing effects of the cellular immune system. This little-heard-of treatment was personally put on a limited trial in what Dr. Burascanno refers to as “personal experience.” He says he is a “believer” and has found these supplements to be surprisingly effective in making the very ill respond better to treatment. He recommends Transfer Factor Multi-Immune and Transfer Factor Lyme-Plus produced by Researched Nutritionals.

C. For Joint Symptoms

Glucosamine can be of long term benefit to the joints. Dr. Burascanno does not believe that adding chondroitin adds anything except expense. He recommends Cartilage Formula by Pharmanex.
Vitamin C is important in maintaining healthy connective tissue. High doses are recommended – 1000 to 6000 mg a day as tolerated. Ester-C is non-acid and longer acting or C-salts are also well tolerated. Start low and increase.
Flex Cream is an “amazing liniment-like products that “really works”. Spread it on thick for body pain - do not rub in. It takes 30 to 60 minutes to work, then lasts for many hours. A Pharmanex exclusive.

If this is getting to sound like a Phamanex commercial, so be it. I would be interested in feedback about the use of these products or others that serve the same purpose. Obviously Dr. Burascanno has had exceptional success with their products. Tell me what you think.

Other Optional Supplements:

Vitamin D deficiency can cause Lyme patients diffuse body aches and cramps that are not responsive to magnesium or calcium supplements. It may assist with normal immune and hormone function as well. It is urged that you have a fasting blood level drawn; levels should be in the upper half of the range. If it is not, 2000 to 4000 units daily are needed for several weeks, then a lower maintenance dose based on repeated blood level monitoring.
Creatine has been shown to benefit in neuromuscular degenerative diseases such as Lou Gherig’s Disease and can help in supporting low blood pressure. It may also help with strength, stamina, and heart function. To take this safely you must hydrate regularly.. Details on his website.
Milk Thistle for liver function – 175 mg daily.

Well, that’s it. It is an exhaustive, if not exhausting list. Hopefully you will approach this all one step at a time. Do not allow this all to overwhelm you. These are all options. My recommendation is to prioritize your symptoms, then to add a short list of supplements to try one at a time so you can see what works for you. The good news is that there are breadcrumbs ahead so you aren’t blazing the path alone!

Blessings,

Cynthia

SUMMARY OF TREATMENT GUIDLINES

Fifth Installment

This section is nearly impossible to summarize. I cannot do justice to the depth and breadth of Dr. Burrascano’s work on the subject. All I can do is to present some of the sweeping principles and urge you to read his work directly if you are interested in the very details of this complex subject. Go to: http://www.lymenet.org/drbguide200509.pdf and you will find his entire abstract.

I offer the following light summary:

Some Principles:

Contrary to early thinking, Dr. Burascanno reports that the bacteria from a tick infected with the Lyme spirochete travels within the nervous system as soon as twelve hours after entering the blood stream! This is why immediate treatment is critical; full dose antibiotics therapy with the right agent is needed to penetrate all tissues in concentrations known to kill the bacteria in the human body.

Point two: It follows that “the longer a patient had been ill with Lyme Borellia prior to first definitive therapy, the longer duration of treatment must be, and the need for more aggressive treatment increases.”

Third point: Using immunosuppressants including steroids with an active infection can cause serious, permanent damage! The immune system is already damaged, and this treatment is dangerous.

Four: Treatment resistance can occur which reduces the success of antibiotic treatment. Some strains of Borrelia burgdorferi actually contains enzymes which undermine the effect of antibiotics such as cephalosporins and penicillins. Longer and stronger doses and treatment with different agents are sometimes necessary in what is now called “treatment resistant Lyme disease.“ This is especially true in some heart conditions which reoccur even after treatment.
B. burgdorferi can cross the placenta and infect the fetus. In addition, breast milk from infected mothers has been shown to harbor spirochetes that can be detected by PCR. Treatment is recommended for pregnant mothers.
Saftey: Long term use of antibiotics has been used for many years for conditions such as rheumatic fever, acne, gingivitis, recurrent otitis,recurrent cystitis, and many other conditions. Treatments have not revealed any consistent dire consequences as a result of such medication use. In terms of the treatment of Lyme disease the very real consequences of untreated, chronic perisistnat infection can be far worse than the potential consequenses of this treatment.

Why do some patients fail to get rid of the disease even after extended treatment?

Here are some clues as to why:

The Lyme bacteria (Bb) can be found both in the fluid and what is called the tissue compartments. Different types of antibiotics are needed to address this problem.
The Lyme bacteria (Bb) can actually penetrate individual cells. What that means is that different antibiotics are needed for inside and outside the cells.
Shapeshifting: this is what the Lyme bacteria seem to do. Like in Star Trek, the Shapeshifter stymies its enemies. The spirochete morphs into a spheroplast (also called an I-form); it then does it’s magic again when it shifts into cystic form. It appears from some recent research that “Bb can shift among the three forms during the course of the infection”. Each form requires different treatment agents. When in cyst form it seems to be able to remain dormant; most treatment agents prescribed for Lyme disease do not penetrate into the cyst. Only two medicines seem to knock off the cyst (metronidazole and tinidazole). This is the equivalent of kryptonite to Superman.
Spirochetes have a very long generation time (12 – 24 hours in vitro and longer in living systems, and may have periods of dormancy during which time antibiotics will not kill the organism! If treatment is discontinued before the infection is cleared, it may cause relapse!
Thanks to Dr. Shoemaker, we know that there is such a thing as Borrelia Neurotoxin! Two research groups have identified that the Lyme bacteria actually produce a toxic substance that effects neural pathways, and therefore effect how our brains function. These compounds cause ongoing inflammatory reactions and they block hormone action. Only indirect methods have been developed to test for the presence of neurotoxins: cytokine activation and hormone resistance can be measured as well as a “visual contrast sensitivity test” can be helpful in documenting the effects of the neurotoxin in the Central Nervous System. The longer you are sick with Lyme, the more neurotoxins may be present.

Two prescription medications can bind these toxins: cholestryamine resin and Welchol pills.If taken over several weeks clinical improvement can be seen. See Dr. Burascanno’s abstract at http://www.lymenet.org/drbguide200509.pdf for particulars.

Treating Lyme Borreliosis

No one antibiotic is always effective for treating Lyme disease. The choice of medication and the dosage are based on multiple factors.

The factors include:

duration and severity of the illness
presence of coinfections
immune deficiencies
prior use of immunosuppressant drugs
age
weight
gastrointestinal function
blood levels
and patient tolerance.

Because we now know how the bacteria penetrate deeply into the tissues, higher doses are recommended than before.

Antibiotics:

There are four types of antibiotics in general use for Lyme disease:

Tetracyclines

Penicillins

Cephalosporins

Erythromycin

Other Antibiotics sometimes used:

Metronidazole (flagyl) may be more effective in killing off the cyst form when combined with one or two other antibiotics. However, the side effects can be quite serious.

Rifampin has been used for decades for the treatment of tuberculosis and meningitis, but may be effective in treating Bartonella, Ehrlichia, Mycoplasm and Borrelia. Side effects and drug interactions must be closely monitored.
Benzathine Penicillin is often used on an intramuscular or intervenous basis. Clinical observation indicates that in many patients it is more effective than oral antibiotics and compares closely to intravenous therapy if the dose is high enough.
Ceftriaxone treatment; A subset of patients have severe, longstanding illness despite antibiotic treatments which have eliminated the disease in less ill individuals. Higher doses of ceftriaxone in a pulsed-dose regimen has been successful for some in these cases. A protocol developed by Cichon in 2002 is used as the current standard of care with this medication.

Additional Observations:

If treated early, Lyme is treated for four to six weeks
If treated late it usually requires a minimum of four to six months of continuous treatment. Treatment must be individualized.
If a patient has been ill for many years it may require open-ended treatment regimens and some patients will require ongoing maintenance therapy for years to remain will!
Several days after the onset of appropriate antibiotic therapy symptoms often flare due to the release of “antigenic material” and possibly bacterial toxins. This is referred to as a Jarisch Herxheimer-like reaction.
Monthly flares presumable represent recurrent Herxheimer-like reaction. The more severe the reaction, the higher the germ load, the more ill the patient! In very ill patients liver enzymes may even elevate and in that case the treatment may need to be slowed. In general, when these flare-ups disappear and there is improvement without the Herxheimer reaction, it is an indication of genuine improvement.

Treatment Failure indicators:

Non-compliance
Alcohol abuse
Sleep deprivation (napping is encouraged in the afternoon)

The Patient’s Job

Keep a daily diary of symptoms, temperature readings in the late afternoon, notes from physical therapists and cognitive testing. this will help determine the best course of treatment.

For details, go to http://www.lymenet.org/drbguide200509.pdf

Blessings,

Cynthia

Checklist of Symptoms/ Dr. Burrascano

Forth Installment

This is a questionnaire Dr. Burrascano developed over the years, and I think you will be amazed at how many symptoms can be associated with Lyme disease. This outline is designed to help the physician in his or her interview of the patient to clarify symptoms and diagnosis which will then lead to the ability to establish a protocol for treatment. Here it is:

Have you had any of the following in relation to this illness? (CIRCLE “NO” OR “YES”)

Tick bite No/ Yes

“Erythema Migrans” rash ( a discrete circle) No/ Yes

Spotted rash over large area No/ Yes

Linear, red streaks No/ Yes

CURRENT SEVERITY/ CURRENT FREQUENCY

SYMPTOM OR SIGN (Answer the following questions by indicating the following: NONE, MILD, MODERATE, SEVERE, NOT APPLICABLE; NEVER, OCCASIONAL, OFTEN, CONSTANT):

Persistent swollen glands

Sore throat

Fevers

Sore soles or heels, especially in the mornings

Joint pain

Fingers, toes pain

Ankles, wrists pain

Knees, elbows pain

Hips, shoulders pain

Joint swelling

Fingers, toes swelling/pain

Ankles, wrists swelling/pain

Knees, elbows swelling/pain

Hips, shoulders pain

Unexplained back pain

Stiffness of the joints or back

Muscle pain or cramps

Obvious muscle weakness

Twitching of the face or other

muscles

Confusion, difficulty thinking

Difficulty with concentration,

reading, problem absorbing new information

Word search, name block

Forgetfulness, poor short term memory, poor attention

Disorientation: getting lost, going to wrong places

Speech errors- wrong word, misspeaking

Mood swings, irritability, depression

Anxiety, panic attacks

Psychosis (hallucinations, delusions, paranoia, bipolar)

Tremor

Seizures

Headache

Light sensitivity

Sound sensitivity

Vision: double, blurry, floaters

Ear pain

Hearing: buzzing, ringing, decreased hearing

Increased motion sickness, vertigo, spinning

Off balance, “tippy” feeling

Lightheadedness, wooziness, unavoidable need to sit or lie

Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity

Facial paralysis-Bell’s Palsy

Dental pain

Neck creaks and cracks, stiffness, neck pain

Fatigue, tired, poor stamina

Insomnia, fractionated sleep, early awakening

Excessive night time sleep

Napping during the day

Unexplained weight gain

Unexplained weight loss

Unexplained hair loss

Pain in genital area

Unexplained menstrual irregularity

Unexplained milk production; breast pain

Irritable bladder or bladder dysfunction

Erectile dysfunction

Loss of libido

Queasy stomach or nausea

Heartburn, stomach pain

Constipation

Diarrhea

Low abdominal pain, cramps

Heart murmur or valve prolapse

Heart palpitations or skips

“Heart block” on EKG

Chest wall pain or ribs sore

Head congestion

Breathlessness, “air hunger”, unexplained chronic cough

Night sweats

Exaggerated symptoms or worse hangover from alcohol

Symptom flares every 4 weeks (called a Herxheimer reaction)

DIAGNOSTIC CHECKLIST

“It is important to note that the Center for Disease Control’s published reporting criteria are for surveillance only, not for diagnosis. They should not be misused in an effort to diagnose Lyme or set guidelines for insurance company acceptance of the diagnosis, nor be used to determine eligibility for coverage.”

For anyone familiar with attempting to either treat or receive treatment for Lyme disease this is a very important statement, and is critical information for treating physician and patient alike. The so-called “Lyme controversy” circles (at least is part) around the difficulty of reaching a reasonable diagnosis with these tick born diseases. Burascanno and associates offer a productive as well as practical approach to the sticky problem of diagnosis (and therefore the treatment) of Lyme disease.

This document aids the clinician by developing a prioritized set of diagnostic criteria; it was developed with the input of dozens of front line physicians and was developed over many years. It creates a relative value in relation to different factors. From the cumulative number it can then be predicted whether Lyme Borreliosis is highly likely, possible or unlikely. The following is a listing of the criteria and their relative values:

LYME BORRELIOSIS DIAGNOSTIC CRITERIA RELATIVE VALUE

Tick exposure in an endemic region: 1

Historical facts and evolution of symptoms over time consistent with Lyme: 2

Systemic signs & symptoms consistent with Bb infection (other potential diagnoses excluded):

1. Single system, e.g., monoarthritis: 1

2. Two or more systems, e.g., monoarthritis and facial palsy: 2

Erythema migrans, physician confirmed: 7

(Acrodermatitis Chronica Atrophicans), biopsy confirmed: 7

Seropositivity (positive blood test results): 3

Seroconversion on paired sera: 4

Tissue microscopy, silver stain: 3

Tissue microscopy, monoclonal immunofluorescence: 4

Culture positivity: 4

B. burgdorferi antigen recovery : 4

B. burgdorferi DNA/RNA recovery: 4

DIAGNOSIS

Lyme Borreliosis Highly Likely: 7 or above
Lyme Borreliosis Possible: 5-6
Lyme Borreliosis Unlikely: 4 or below
Dr. Burascanno suggests that when using these criteria, you state Lyme Borreliosis is “unlikely”, “possible”, or “highly likely”
based upon the following criteria”- then list the criteria.

This is actually a revolutionary approach to the diagnosis of Lyme disease and could facilitate a rational approach to this devastating illness.

As you can see some of this criteria is technical and for our purposes the details of some of these tests are better left in the hands of physicians and laboratories. However, let it be said that patient knowledge and self-advocacy is critical to obtain the best diagnosis and treatment of whatever condition/s we have; this blog is dedicated to your ability to work consciously with your treatment providers for optimum health and well-being.

Blessings,

Cynthia

Diagnosing Lyme Disease

Third Installment

CLINICAL DIAGNOSIS

Were you expecting a list of blood tests that would determine if Lyme disease is present or not? Surprise: “Lyme Borreliosis (LB) is diagnosed CLINICALLY, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient’s symptoms.” Some physicians rest the case of Lyme disease squarely on the Lyme titre, and some others, with the Western Blot. Based on Burrancano’s experience, and other physicians who specialize in Lyme disease the picture is much more complex than previously understood. Blood serology can be considered as informational, but cannot be used exclusively.

It is critical that concurrent conditions and even alternate diagnoses be considered; the entire clinical picture has to be taken seriously. The situation becomes very complicated in late, disseminated Lyme disease since any organ or system may be affected, and symptoms may or may not be caused by the Lyme vectors.

So, we can’t count on blood tests alone, we need to look at the whole clinical picture, and we need at the same time to question whether the presenting symptoms are related to “Lyme” or a separate disease state! This is not easy. The disease is known as devious and cunning, and it takes the medical equivalent of Sherlock Holmes to clarify diagnosis.

ERYTHEMA MIGRANS

This is the term for a rash which sometimes accompanies a tick bite from an infected tick. Did you know that it is present in fewer than half of those bitten by an infected tick, and many that have a rash do not see it or misinterpret the rash. The rash begins four days to several weeks after the bite, and it may be warm to the touch. In less than 10% of the time there are multiple lesions. Some have an unusual or atypical appearance, just to add a little spice to the story. If the rash is ulcerated or if there is a vesicular center, this may represent a mix of infections at the same time.

Often, blood tests do not show positive for several weeks, so if the rash is present it is important to begin treatment immediately. The earliest treatment hold the highest success rate!

DIAGNOSING LATER DISEASE

Blood tests reveal if our body had been fighting the disease; these tests do not directly indicate whether the spirochete is currently present! (Test results are often inconsistent so it is important to use the most highly respected labs.)

Not recommended:

Start with the ELISA blood test. If that is positive,
a confirmatory western blot

This is not recommended since the ELISA is not sensitive enough to serve as an adequate screen; many patients are negative with the ELISA and positive on the Western Blot.

Recommended:

IgM and IgG western blot

Note: when late cases of Lyme disease are seronegative, 36% will transiently become seropositive at the completion of successful therapy. In those cases the CD-57 is useful.

LIST OF BLOOD TESTS

OK. Here is what you have been looking for, right?

Western Blot

This blood test works by showing which “bands” are reactive. (For our purposes, we do not have to know the complex medical underpinnings of the test.) One very important band is 41KD because it shows up the earliest. Bands 18KD, 23-25 KD (Osp C), 34 KD (Osp B), 37 KD, 39 KD, 83 KD and the 93 KD bands are species-specific ones, but appear later, or may not appear at all.

PCR

This test is now available. Though very specific, sensitivity is estimated at less than 30%. The reason for this is because Bb causes a deep tissue infection and is only temporarily found in the blood. For this reason a negative result does not rule out infection, but a positive one is significant. The patient needs to be free of antibiotics for at least six weeks for the test to be effective!

Antigen capture

This test is becoming more widely available and can be done on urine, cerebral spinal fluid and synovial fluid. Sensitivity is low on this one too, less than 30% but specificity is high (greater than 90%).

Spinal tap

These are not routinely recommended since a negative tap does not rule out Lyme disease. This test is done only on patients with pronounced neurological manifestations in whom the diagnosis is uncertain.

Biopsy

Dr. Burascano strongly recommends a biopsy on all unexplained skin lesions along with a PCR and careful history taking. The pathologist needs to be alerted to look for spirochetes.

CD-57

This test is a breakthrough in Lyme disease diagnosis and treatment. Chronic Lyme disease infections are known to suppress the immune system and can decrease the quantity of the CD-57 subset of what is known as “natural killer cells.” We can now use the CD-57 count to indicate how active the Lyme infection is and whether, after treatment ends, a relapse is likely to occur. This is a very important and helpful test to keep in mind to assist in diagnosis and treatment. Dr. Burrascano has found that LabCorp is the preferred lab as published studies were based on their assays. Active Lyme patients often measure about 60, whereas a normal count is above 200. If the CD-57 is not in the normal range when a course of antibiotics has ended, then a relapse will almost certainly occur.

OK. That’s it. Hopefully this translation of Dr. Burrascono’s information on the diagnosis of Lyme disease and the tests often ordered was helpful. The next installment will provide his checklist of symptoms often associated with Lyme or related coinfections.

Blessings,

Cynthia

Lyme Disease-Collateral Conditons

Second Installment: Collateral Conditions

(See above for first installment)

When Lyme disease exists for an extended period of time the immune system is compromised. This sets the stage for the possibility that other conditions will develop. Dr. Burascanno and others have observed the following abnormalities may coexist:

Vitamin B 12 levels may be compromised and if serious deficiencies are found aggressive treatment is indicated, especially with neurological involvement. This is what Wikipedia has to say about the function of B12: “Vitamin B-12 is a water soluble vitamin with a key role in the normal functioning of the brain and nervous system, and for the formation of blood. It is one of the eight B vitamins. It is normally involved in the metabolism of every cell of the body, especially affecting DNA synthesis and regulation, but also fatty acid synthesis and energy production.” So you can see that energy levels may be effected with low vitamin B12 levels, and the functioning of the brain and nervous system enhanced with supplementation if indeed there is a deficiency. This is a very complex subject and referral to an endocrinologist may be indicated.
Magnesium deficiency is commonly found in chronic Lyme patients, and Dr. Burascanno reports that cases can be quite severe. Hyperflexia, muscle twitching, heart (myocardial) irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Sound familiar? Oral preparations are acceptable for maintenance, but if there is a severe deficiency parenteral dosing (dosing by injection or infusion) may be needed until neuromuscular irritability has cleared.
Pituitary and other endocrine abnormalities are more common than thought. A full battery of tests is often needed, especially with the low energy levels associated with Lyme. The thyroid indicators of free T3 and free T4 levels as well as TSH, and nuclear scanning/testing for auto antibodies may be necessary to ferret out dysfunction.
Inflammatory cascade is a phrase that has such panache, doesn’t it? It is an elegant way of reflecting the painful condition that usually accompanies most stages of Lyme disease. When this is activated a process occurs in the cells that blocks hormone receptors. Insulin resistance can result! Clinical hypothyroidism (or sub-clinical hypothyroidism) can result from this receptor blockade and hypothyroidism can exist in spite of normal serum hormone levels!! This may account for weight gain in 80% of Lyme patients. Low AM body temperatures are common in this condition. If hypothyroidism is found, it is recommended that both T3 and T4 levels are treated until levels are normalized.
Neurally mediated hypotension (NMH) is not uncommon. What is this, you might ask? This is low blood pressure caused by disease in the neural pathways of the autonomic nervous system. Symptoms include: heart palpitations, lightheadedness, shakiness after exertion and prolonged standing, heat intolerance, dizziness, fainting or near fainting, and the unavoidable need to sit or lie down. Sound familiar? (Hypoglycemia should be ruled out.) A cardiologist can test for this by a tilt table test and something called the Isuprel challenge. Treatment may include increasing sodium and fluid intake and possibly something called Florinef plus potassium. Treating the underlying cause, Lyme disease, is critical to correct the autonomic dysfunction in the long run.
Abnormal brain function; Spect scans can help to identify a pattern of abnormal blood flow and chemical reactions in the brain associated with Lyme disease/s. A knowledgeable radiologist may be able to distinguish between a psychiatric based illness as opposed to Lyme encephalopathy. There are certain characteristics that show up in Lyme patients called hypoperfusion or what is called cerebral insufficiency. These tests are not used for diagnostic purposes, but can be helpful in understanding the functioning of the brain, and lay the groundwork for treatment.

Treatments may include vasodilators, acetazolamide, serotonin agonists and even Ginkgo Biloba (pharmaceutical quality) – although more tests on this herb need to be completed. These treatments, as always, should be prescribed by a knowledgeable treating physician.

Now, this has been quite technical, but interesting, don’t you think?

Lyme Disease

EMPOWERMENT THROUGH KNOWLEDGE

Unless Lyme disease is identified and treated quickly, it can turn into a complex, extended and even life-threatening illness. The medical community has been embroiled in a bitter political war that has left many patients on their own, suffering and in despair. When Doctors “don’t believe” in the existence of Lyme disease and “blame the victim”, this leaves many of us with a disease that moves underground and becomes embedded and intractable. Those physicians who have taken a stand, those who have listened to their patients and have taken strong measures in the attempt to treat their Lyme patients have often been undermined if not sued in an amazing modern witch hunt.

Identification of the most appropriate testing and treatment protocols for this complex of tick-born diseases is inadequate; only with extensive research by dedicated clinicians with an open mind will we be able to uncover the most effective treatments for this devastating growing epidemic. There is a ground-swell of support for objective, clear-headed research and treatment from the lay population that demands a change from the splitting and attacking that has occurred in the field, to a collaborative treatment approach based on real facts.

There are some physicians who have braved the prejudices and who research and treat in spite of the contentious atmosphere. The following summary highlights one such physician and his findings. We, the people, also need to take charge of our own medical lives and health. We need to gather information and learn about our bodies and the ways in which we can begin to heal ourselves. We need to take responsibility for our health by learning everything we can about ourselves and the cunning disease which robs us of life force, generates pain and undermines the very underpinning of our minds.

This is the first clinician/researcher that will be spot-lighted. Here goes:

First Installment

Joseph J. Burrascano Jr., M.D. has just published a critical update on Advanced Topics in Lyme disease, sixteenth edition (copyright October, 2008. He is one of the foremost experts on this condition, and has written a comprehensive and very helpful paper on “Diagnostic Hints and Treatment Guidelines for Lyme and other tick borne illnesses”. Anyone who has ever had Lyme disease or knows anyone with this illness or complex of illnesses, please keep reading. I will summarize some of the important findings for you.

Dr. Burrascono subscribes to a broad view of the definition of Lyme disease. Traditionally Lyme was defined as an illness caused by the spirochete, Borrellia burgdorferi (Bb). Clinically it may be helpful to consider this specific disease may be manifesting with other tick borne infections (called coinfections) such as Babesia species, Bartonella-like organisms, Ehrlichia, Anaplasma, Mycoplasma and viruses. Yeast and nematodes may be tick-born as well. Coinfections may result in “more severe clinical presentations with more organ damage.”

He sees three categories of Lyme disease: acute, early disseminated and chronic.

Taking a stand on the issue of Chronic Lyme Disease, based on clinical data he offers a working definition which include three criteria: 1. where the illness is present for at lease one year, 2. where there have been persistent major neurologic involvement and 3. still have active infection with (Bb) regardless of prior antibiotic therapy.
Key: if not treated early the immune system is compromised (Bb has been demonstrated in vitro to both inhibit and kill B- and T- cells and will decrease the count of CD-57 subset of the natural killer cells).
With a compromised immune system other pathogens which may have entered into the “host” at the same time may proliferate and the immune system is unable to fight off the other tick-transmitted microbes. Also, other infections which predated the tick bite may proliferate while the body is in a weakened state.
Severe stress, immunosuppressive medications like steroids and other illnesses worsen Lyme disease because they further weaken the immune system’s ability to defend and fight for health.
Damage can occur in virtually any bodily system.

For treatment to be successful all of the active infections have to be treated in a thorough and systematic manner. “Only by addressing all of these issues and engineering treatments and solutions for all of them will we be able to restore full health to our patients.”
For the majority of patients with chronic Lyme the nervous system has been affected. Thus neuropsychiatric testing, SPECT and MRI brain scans, CFS analysis at times and input from Lyme-aware neurologists, psychopharmacologists and other clinicians is critical.

The next installment will include information about collateral conditions which are associated with Lyme disease; these include B 12 levels, magnesium levels, pituitary and other endocrine abnormalities, inflammatory cascade, and neurally mediated hypotention.

The third installment will include a review of the tests most helpful in the diagnosis of different tick-born infections.

The forth installment will include Dr. Burrascano’s check list of symptoms. The diagnostic checklist is used to aid the clinician with a workable set of criteria. The document has been refined over the years with input from many front-line physicians.

The fifth installment will make reference to treatment regimens developed for the specific infection/s identified. This part is extremely complex and I will be referring you to the original source for detailed information about this aspect.

The sixth installment will summarize nutritional supplements in disseminated Lyme disease and optional supplements for special circumstances.

The seventh, and last installment will refer to Dr. Burrascano’s Lyme disease rehabilitation recommendations.

Before closing, I would like to tell you that I have lived through chronic Lyme disease myself, have supported family members, friends and patients through the painful maze, and would be happy to offer my expertise and solace to you or your loved-ones as you seek health and wellness.

Blessings,

Cynthia

P.S. Look for further writings on this subject in the Blog section on Lyme disease.

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Cynthia M. Chase

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