Hello, I decided to publish my notes in preparation for a presentation to those who are caring for someone who is ill, with Lyme disease, cancer, or any life-altering or life threatening illness.   The presentation will occur tonight, November the 5th at 6:30 at Bacchus Hospital in Norwich, Connecticut under the auspice of LymeLink.  I hope you will find it helpful and give you the support you need and deserve as you care for your loved one.  Since these are shorthand notes, if you have questions or want further elaboration, please blog or write!

• How do we really take care of ourselves, what does this really mean?

A.  Physical care for the caretaker

• A day in the (ideal) life
• Sleep – six to eight hours per day; create a sleep sanctuary, low electric magnetic frequency in room, no light, shades to keep out light, replace light emitting electronics, regular bedtime, natural bedding and covers, animals in the bed or room?, earplugs, (for you or partner, sleep apnea?)eye covers, cotton pajamas or no clothing, no TV in bedroom, no drinks after 6, dinner as early as possible, light dinner, heavier meal at lunch, warm shower or Epsom salt bath before bedtime, soothing CD to assist with relaxation, herbal tea to promote relaxation – not too late, melatonin, valarian, hops, liquorish, combination teas for sleeping, routine, calming ritual, foot bath/soak (Epsom salt), sit back on neck or back massager in chair
• Awakening – natural or alarmed? if alarmed, can it be soft, gradual? Or a combination of increasing natural light with carefully chosen music, hot-cold shower, glove scrubber, gentle, pure soap to reduce allergen challenge,  pure shampoos, other personal products, stretch neck in shower with hot water on neck, left and right, then forward (Yoga stretch), focus on stress and worry flowing down your body and down the drain – takes no additional time,
• Dry brushing with a natural bristle brush all over your body, all in the direction of your heart
• Neti pot – nasal lavage – 2 times per day to prevent colds, flu, sinus infections, nose bleeds, ear infections, etc.
• Frequent hand washing with warm water and soap (no need for anti-bacterial agents, can create rebound)
• Dental health critical – electric tooth brush preferred; regular dental appointments and cleanings
• Regular health check-ups
• Weekly or bi-weekly massage, Energy healing
• Daily moderate exercise at a regular time (15-20 minutes a day, at least three times per week); mix and match

1. Yoga – physical, emotional, spiritual practice – all encompassing life style
2. Walking – can be gently aerobic, easy on joints, can use iPod with uplifting music, mood elevating; running if conditioned, though this is potentially more dangerous
3. Biking (spinning classes)
4. Pilates – combination of Yoga and western type exercising – but be careful for pulling muscles
5. Swimming – excellent all over exercise; aqua classes are gently aerobic and strengthening as well as social
6. Jacuzzi, hot tub – toxin release
7. Sauna – toxin release
8. Steam room – toxin release – all are stress reducers

• Diet

1. Andrew Weil’s anti-inflammatory diet
2. Blood Type Diet
3. Drink ½ your body weight in ounces (if you weigh 120 lbs, drink 60 oz per day) – spring or filtered water
4. How much did you weight at age 20-25?  Was that your ideal weight?  Gradual restitution of body balance fosters the body’s self-healing
5. Focus on fresh, organic vegetables and some fruits – nurturing for the body, and detoxifying
6. Garlic, garlic, garlic
7. Focus on whole foods (foods that your grandmother would have recognized as food) – do you know what processed food is?  In my lifetime:  processed foods, genetically modified, chemicalized, denatured, dyed, bleached, enriched, stripped, hormone-fed, artificial fertilizers, artificial ingredients with names you can’t pronounce.  Read the labels, keep it simple and natural.  Introduce more raw foods into your diet – vita-mix and juicing; if our body does not “recognize” food substitutes, it turns to fat and cellulite (pollution)
8. Do not cook with aluminum pans; rather use cast iron or enamel covered pans
9. Use some Himalayan or Celtic seas salt:  provides micro-nutrients – composition is compatible with our body composition
10. Some animal and fish protein – organic and free range – very important.  Have less but of better quality – same money
11. Substitute natural sweets for white, cane, processed sugar; eliminate foods containing xxx corn sweetener xxx – molasses, local honey to reduce allergies, fruit, naturally dried fruit, 85% cacao chocolate
12. Moderate caffeine usage (excessive caffeine restricts blood flow to the brain, lowers cognitive function and can exacerbate emotional and mental health problems.)
13. Introduce green tea to promote focus, and enhance anti-oxidant function
14. Greens in powdered for capsule form helpful in detoxing
15. Moderate alcohol consumption of red wine with meals
16. Celebrate with each meal!  Candles at the dinner table, pleasant table talk, social time, or if alone, celebrate with yourself.

C.  Mental, Psychological, Emotional Care for the Caretaker

• The Dark Side:

1. My state of happiness depends on you; if you are well, then I will be OK
2. I love you
3. You matter more than me
4. I am unworthy of care and love
5. I am a function of giving
6. I do not honor my individual self
7. I am here for you
8. I am a machine; I can give unconditionally without regard to my own resources
9. I can do anything out of Love for you regardless of my own needs
10. I have no needs, it’s all about you
11. You first
12. Me last
13. I deny my exhaustion, pain, fear, need
14. I insist I can do this
15. I have no time for caring for myself
16. I am too busy, I have too much to do
17. Doing is more important than being
18. Love is a one way street, for now
19. My time will come, but I can’t think about that now
20. I numb myself in order to keep on going
21. I am helpless to heal you
22. I cannot control your illness, so I feel out of control
23. I want to fix you so you will feel better, then I will feel better
24. I am overwhelmed
25. I find myself compulsively engaging in pleasurable but dangerous behavior
26. I get irritable and tired, but I must ignore it
27. I feel like I am being used and victimized
28. No one is taking care of me and I resent it
29. I am sacrificing myself and no one even notices it
30. I don’t feel appreciated
31. I resent that others are not helping out
32. Why am I always the one that others rely upon?
33. Why do I have to do it all?
34. I am angry, but feel guilty about it
35. I shouldn’t be feeling what I am feeling
36. I love you, but now you are becoming a burden
37. When will it be over?
38. I want out
39. Guilt, guilt, guilt
40. I hate you
41. I hate myself for hating you
42. I should be a better person
43. I deserve punishment for being so mean, irritable and hateful
44. I don’t feel well
45. I am tired
46. I have pain and misery
47. I feel isolated and alone
48. I can’t tell anyone about these dark thoughts and feelings
49. If I did they would see through me
50. I would be rejected for the selfish person I am
51. I feel like giving up
52. Stop being a baby
53. Buck up
54. Get over yourself
55. I am hungry
56. I am tired
57. I want to disappear

• The Light Side

1. I love myself
2. I love you
3. I deserve time for myself every day
4. I nurture myself for me
5. I nurture myself so that I can share my love and care for you
6. I consciously work at balance in my life
7. I tune into my feelings and my body
8. I identify compulsive behaviors and begin a recovery program
9. I am aware of what defenses I use, and use them consciously as I need them, not automatically
10. I identify and express my feelings in a healthy, assertive manner
11. I avoid extreme and all or nothing thinking
12. I challenge rigid thinking and seek to expand my consciousness
13. I key into my body to check for somatic feelings so I can know what I am feeling
14. I recognize boundaries and maintain boundaries with others
15. I stop trying to control and fix others. I give less advise and fewer explanations
16. I treasure myself
17. I eat well, I exercise and relax every day
18. I honor the different parts of me: wife, husband, daughter, son, mother, father, aunt, uncle, colleague, student, friend, worker, chef, housewife
19. I honor the physical, mental, psychological and spiritual aspects of myself
20. I remember that I am larger than any one moment
21. I swim, walk, meditate, dance, pray
22. I get massages, energy work, other healing on a regular basis
23. I watch funny movies
24. I nurture my creativity
25. I remember what play is; I play
26. I learn to trust myself
27. I love you
28. I care for you
29. My cup floweth over and I joyfully share what I have with you
30. I say No so I can say yes
31. I talk to you (as appropriate) about my feelings and needs
32. I honor your strength and gifts and ask for your help in the ways that you can give
33. In so doing, that strengthens you
34. I confront you if you become abusive or irritable with me
35. I offer “in your face compassion” if that is what is needed
36. I protect myself from abusive and destructive relationships.
37. I focus on what people do, not what they say:  reality
38. Therapy helps at an impasse

D.  Spiritual Care for the Caretaker

1. I express gratitude for the gifts of life
2. I practice surrender to a higher power
3. I pray (talk to Spirit) and meditate (I listen to Spirit) daily – start out with just 5 minutes—up to 30 minutes
4. I walk the earth and feel connection with the force of nature, and accept solace from that connection
5. I practice living in the present, being here now
6. I practice compassion and forgiveness for myself and others
7. I open myself to intimacy and tenderness in my relationships
8. I practice the art of “seeing” the beauty in nature, art, music
9. I remember that this, too, will pass
10. I remember that I, and we are part of the whole
11. I surrender to Spirit and ask for help
12. I remember that I am not alone

Namaste,

Cynthia

I have collaborated with a college student who wrote her thesis on Lyme disease in the development of this monologue:

Lyme disease And Mental Health:  Is There a Connection?

By Jillian Cote in collaboration with Cynthia M Chase, MSW, LCSW

Introduction

Lyme disease is a very controversial and complex disease. Many people believe it originated in the United States in Lyme, Connecticut. It was thought to be a rare disease that was endemic only to the Northeastern United States. It was believed to be transmitted through the bite of a deer tick. Initially it was also believed to be a disease that caused mainly arthritic symptoms and was not considered to be very serious.

Over the years many people become infected and it has virtually become an epidemic; the disease has spread and has now been identified  in Canada, England, Scotland, Sweden, Norway, Russia, Poland, Portugal, Croatia, Switzerland, Italy, Africa, Mexico and many South American countries.    As a result of study and research all of the “early” beliefs are now being questioned or built upon.

The more research that is done, the more questions arise.  One of the most frustrating and challenging aspects of Lyme disease is the possibility that the disease affects the brain, cognition and feelings.  What effect does Lyme disease have on mental and emotional functioning? Does is cause mental illness? Can Lyme disease cause an exacerbation of existing mental disorders?

Why I Chose This Subject

This subject matter that is very close to home for me:  I personally struggle with this debilitating disease.

• I was bitten by a tick at the age of 15; it was not considered significant at all; after all, it was just a “bug bite” without a rash.

I became ill over the next few years.  I made no connection with the range of symptoms and the bite of a tick at age 15.  My symptoms were perceived as “odd”; I would get sinus infections at least once a month, migraine headaches at least once a week. I was diagnosed with mononucleosis two times.  Extreme fatigue hit,   joint pain developed, and I developed double vision. I experienced more serious symptoms at around age 18, including tingling in my hands and feet, shooting pains in my legs, and by age 20 I could barely get out of bed. We had no idea what was going on! I was tested extensively and all tests proved negative.

During this same period of time I also began to experience other symptoms that were not physical, but rather were psychological and cognitive in nature.  My memory deteriorated dramatically, I experienced a heavy and unremitting depression, and could not focus.  These symptoms made it difficult to advocate for myself; I could not focus or think straight.

In the absence of a positive medical finding, I was told I was “crazy”, depressed, that I was just making it up. Over the years I was told repeatedly that my symptoms were “psychogenic” (that is, originating of my mind) by numerous doctors.

• At age 20 (I am now 29 years old) I found a Lyme disease specialist (Kenneth B. Liegner, M.D., P.C., Internal & Critical Care Medicine Lyme Borreliosis & Related Disorders, 8 Barnard Road, Armonk, New York 10504) who diagnosed and treated me based on my symptoms.  I experienced significant improvement under his care.
• Years later my condition worsened again .After extensive testing, brain specs, spinal taps, MRIs, and lab work sent to a special lab in California (Igenix), I finally had a medical diagnosis based on serology! This specialized lab found the Lyme bacteria in my spinal fluid, which then allowed me to receive medical treatment that was covered by my insurance company.  I received treatment from Dr. Richard Horowitz of Hyde Park, N.Y. He placed me on oral antibiotics, intravenous antibiotics and injections.  With this approach my health improved and I felt I had my life back for the first time in years.  This was also the first time I was covered by my insurance company for treatment:  this was a great relief!
• There were finally periods of remission again, but gradually I went back on to the Lyme disease roller coaster.  Periods of minor improvement were peppered with old and new symptoms, one as debilitating as the next.  I tended to deny my symptoms.  I was “sick and tired of being sick and tired!”
• I had to return to my home state for my family to care for me since I became so ill again!  I found another Lyme literate Doctor, Dr. Alphonse Campo in Stamford, Connecticut.  It was found that I had adrenal exhaustion and hypo-thyroidism, more than likely a direct or indirect result of the Lyme disease. The new course of treatment included antibiotics, and other heavy duty prescription medication for Lyme and co-infections, B 12 injections, medication for nausea, medication for pain and exhaustion, thyroid medication and assorted treatments for sinus and upper respiratory conditions, treatment for migraines, herbal therapy, psychotropic medication to even out my mood, and medication for anxiety.  I was a walking pharmacy, but I began to experience some relief.

Each person is affected differently by the disease depending upon where the bacteria move and multiply in the body.  In my case, I finally had clear evidence that the bacteria were multiplying in my spinal cord.  It now made sense that Lyme disease could affect my feelings, cognition and emotions.

From my own experience, it is clear that this disease not only causes physical symptoms but it can cause emotional or mental health issues as well. Depression, anxiety, and Attention Deficit Disorder are just a few that I experienced. Not only did my physical symptoms develop as a result of Lyme disease, but psychiatric symptoms developed that were not in evidence previously.

I do not speak as an expert, but as a person who has become ill with an insidious and complex disease. Since diagnosis and treatment is still so undeveloped, I have found it critical to become my own advocate, no matter how sick I am.  I have made it my priority to research what is known about the disease, and to pursue treatments based on my hard won knowledge.  I have a particular interest in discovering how to distinguish between primary depression, or depression as a consequence of having Lyme. This is where I have tried to focus most of my research.

What is Lyme Disease? The History and Biology of the Disease

In the United States it is believed, as Vanderhoof-Forscher (1997) point out,  that Lyme disease was discovered in 1977 in the small town of Lyme, Connecticut; hence then naming of the disease(p.36). A woman named Polly Murray living in Old Lyme, Connecticut found that she developed rashes, headaches and swollen joints and later, she also suffered memory loss, nausea, shooting pains throughout her body along with intense fatigue.  She went to major medical centers in New York and Boston but was told consistently that her illness was psychogenic.

As family members and neighbors developed the same or worse symptoms, she was more committed than ever to uncover the true cause of this strange complex of symptoms.  Finally she called the Connecticut Department of Health.  Her persistence eventually led to researchers Mast and Burrows to identify successful treatment of patients with antibiotics bitten by ticks as reported in the Journal of the American Medical Association.

The first actual recorded case of Lyme disease or condition associated with it, according to Vanderhoof-Forscher (1997) was not in America, but in Germany in 1883 (p.37).

In 1909 a Swedish physician, while at a meeting of the Swedish Society of Dermatology, presented research that can be considered ground-breaking about a ring-like, expanding lesion that he had observed. This physician was Arvid Afzelius; he published his work after 12 years and hypothesized that this particular rash was caused by the bite of an Ixodes tick. This rash is now know as an “erythema migrans” (EM) and can be considered a characteristic sign of Lyme disease as well as used as a tool for diagnosing the disease.

Vanderhoof –Forscher (1997) also tells us in 1945 researchers in Europe had  published research papers in reference to very similar if not identical symptomology to that of the disease we later identified as  “Lyme” (p.36).

Research continued and cases of this disease were showing up in other countries; foundations were formed to help aid in the research. According to Vanderhoof-Forscher (1997) the main “pioneers” of Lyme disease research and discovery were mainly Europeans.   In America a brilliant researcher working at the Rocky Mountain Laboratories of the National Institutes of Health named Willy Burgdorfer actually discovered the spirochete named Borrelia burgdorferi (Bb) in honor of this pioneering work.

It then became unequivocally known that Lyme disease is an illness that is transmitted through the bite of a tick. Not all ticks carry Lyme disease; the most common carrier is the deer tick. This particular bacterium is shaped like a corkscrew and is called a spirochete; it is in some ways similar to the one that causes syphilis.

Lyme disease is then a multi-symptomatic illness which can and in many cases does affect the central nervous system. Individuals with Lyme disease can also be infected by other bacterial, viral, amoebic and parasitic organisms through the bite of a tick.  Multiple infections can occur at the same time!

Here are some fascinating, but nightmarish facets being studied now: based on my study of the research on Lyme disease, it appears that

• Bb has the ability (within the first few weeks of initial infection) to invade the central nervous system (or CNS) via the cerebrospinal fluid (or CSF). Spirochetes can then attach to glial cell (cells in the brain that are particular to the nervous system) as well as other brain tissues. It also penetrates deep into body tissue and other body fluids, not staying in the blood.
• Amazingly, it has been shown that spirochetes have the ability to genetically alter themselves and create a new strain of spirochete.
• Another confounding factor is that once bitten, symptoms may not appear initially, for months or possibly years possibly due to a latency period possibly relating to the replication rate, and or due to the ability of the spirochete cells to be covered by a “viral cloak” which hides its identity to the fighter white blood cells!
• Lyme disease is very difficult to diagnose through laboratory testing.  These blood tests are not highly reliable, although there appear to be some that are more reliable than others.  The Infectious Disease Society has developed recommendations for the diagnosis and treatment of Lyme disease that are restrictive and that exclude many who are suffering from the clinical symptoms from the diagnosis; it therefore, excludes many from treatment.
• Since these organisms are so complex and not fully understood, there appears to be a high rate of results coming back as a false-negative. Bb is extremely difficult to culture; some of the “antigens” of Bb are also shared by bacteria that cause other diseases.  This then adds to the problem of a clearly defined diagnosis.

In the event that blood serology comes back negative Lyme literate physicians are then drawn to look carefully at the clinical symptoms. A full evaluation is then needed, looking at the patient’s full health history, current symptoms, physical exam, neurological exam, and current mental status.

The Stages and Symptoms

Many people have been lead to believe that first symptom and “tell all” of Lyme disease is a “bulls-eye” rash, or medically known as an “erythema migrans.”  This has actually proven to be false.    Estimates suggest that roughly 1/3 of people do not recall getting the rash or getting bit; other estimates are even higher.

“Lyme literate Physicians” have determined that aggressive treatment needs to be started immediately. Among this group of Lyme treaters, it is also believed that the sooner a person is treated after getting infected the higher the chance for successful treatment. If an individual is undertreated then Lyme disease may come back as chronic and with many additional problems, complicating diagnosis; additional treatment will be more costly than if initial treatment was immediate.

There are believed to be distinct stages of Lyme disease;

• Some of the symptoms of early Lyme disease can include: headache, fatigue, malaise, serious muscle aches and pains, fevers, chills, sore throat, profuse sweating, diarrhea, swollen glands, and joint pain.
• Symptoms that are typical in later stages of Lyme disease can also include: sleep disturbance, photophobia, extreme irritability, word-finding problems, and dyslexic-like errors.  It can also have dermatologic, arthritic, ophthalmologic, cardiac, neurologic, and psychiatric manifestations.

Mental Effects, Psychological Illness, and Other Possibilities

My focus will now be on the mental and emotional complications of Lyme disease.  There are multi-dimensional challenges to the Lyme patient:

• The patient may suffer with a range of roving physical symptoms
• A full range of psychiatric manifestations may develop
• Physical and emotional pain de-stabilize
• The Lyme patient may be subject to a medical establishment that often fails to listen to the patient, and accuses the victim of fabricating symptoms.
• Medical insurance companies, based on the model that is economically driven supports a restrictive definition of the disease, little knowing that failure to quickly and aggressively treat creates multiple conditions that cost insurance companies so much more.
• Self doubt is inevitable under the circumstances. Lyme disease is a disease you can’t see; suffering on the inside may not necessarily be visible on the outside, confounding loved ones and providers alike.  ”But you look so good” is a common refrain, but to the Lyme patient when physical and emotional pain is not validated existential despair intensifies.
• Add to this picture the possibility that Lyme disease can actually cause or exacerbate psychiatric illness and you can see that the suffering and confusion exponentially increase.

There is a broad range of psychiatric reactions or disorders that are proposed as being associated with Lyme disease.  Dr. Robert Bransfield, a psychiatrist from Red Hook New Jersey, has developed an extensive psychiatric evaluation based on his observation of the Lyme patient.  He has identified many psychiatric conditions that are associated with Lyme disease:

• paranoia
• dementia
• schizophrenia
• bipolar disorder
• panic attacks
• major depression
• anorexia nervosa
• delusions
• thought disorder
• auditory hallucinations
• olfactory hallucinations
• visual hallucinations
• confusion
• personality changes
• violent outbursts
• catatonia
• and obsessive-compulsive disorder

Depression is the most common psychiatric syndrome affecting an estimated one third or more of all Lyme disease patients.  As I mentioned earlier it is suggested that during diagnosis of Lyme disease while gathering an individual’s clinical profile, psychiatric disorders should be included.

Psychiatric evaluations can become very difficult and complicated especially when the individual’s symptoms appear after they have already been through a standard course of antibiotic treatment.  In some people psychiatric manifestations are the predominate symptom and they can range in severity from agitated or depressive states to someone who looks as if they have clinical dementia.  Studies have been done and have shown that individuals with Lyme disease do have a higher rate of mental health illness or psychiatric problems.

A case study that was done on children with Lyme disease actually showed that behavioral or mood disturbances were the second most common symptom resulting in mood labiality, decreased interest in play, and or poor performance in school; it has also been said to be linked with ADD and ADHD.

The psychiatric symptoms of an individual with Lyme disease often do not fit into a neat textbook definition. There may be multiple conditions not usually seen together in one patient.  These patients may not respond well to psychiatric medication. Psychiatric symptoms can get worse as the Lyme bacteria grow more active and reproduce, and then patients may experience “flare-ups” of their physical and psychiatric symptoms, which often times are triggered by the Herxheimer reaction or stress.

Individuals with Lyme disease can develop emotional impulsivity; some may become verbally abusive while others may become withdrawn and lose self confidence.

These complexes of medical and psychiatric stressors may diminish a person’s ability to cope with daily life challenges and daily tasks. It appears that part of the reason for this is that the part of your brain that deals with signs and signals, like a processing center, can also be affected by Lyme disease.  Lyme disease can cause swelling in the brain and thus affects the ability to control thoughts, concentrate, and process things. There has also been speculation that temporal lobe seizures may contribute to angry outbursts, and other changes.

Lyme disease not only diminishes the quality of life individuals; families and marriages are affected when one or more family members are diagnosis with Lyme and or co infections. If only one individual in the home has the disease it can be hard for other family members to truly understand what they are experiencing and accept the reality of their inner condition. Lyme disease may show up in a combination of mixed and confusing symptoms not always allowing those around that person to clearly identify the source of the problems.  Add to that low frustration tolerance and sudden and unusual personality changes in the Lyme patient, and then it can get even more destructive to family interaction.

If more than one family member has the disease it may be slightly easier for them to understand each other which may be considered positive.  However, you now have two individuals with the same disease that can be presenting completely different symptoms. When two or more people feel tired, ill, pained, a previously well functioning family can end up in a downward spiral.

Because the effects the disease can have on the brain Lyme disease patients are not as capable at thinking things through; they may tend to be impulsive. During an angry outburst or in a fit of crying this can turn explosive and destructive.  In a “Lyme Rage” it is possible that domestic abuse may be fostered; it is often overlooked as part of the etiology of a family breakdown.

There are also some secondary psychological issues that Lyme disease patients tend to face. These consist of symptoms like:

• low self-esteem
• guilt
• bitterness
• feelings of alienation
• feeling inadequate
• And doubting one’s own sanity.

Individuals with Lyme disease will often say that they feel like they have lost complete control of everything, not just of their body and emotions, but of their ability to even think clearly and comprehend as they did in the past.  Many people are not sure where to go for help, information or treatment. These secondary issues can be just as difficult to deal with as the direct effect of the disease itself.

Many doctors, when faced with negative blood work or serology, will suggest that the patient be evaluated by a psychiatrist. Considering that Lyme disease may manifest with psychiatric symptoms it may be helpful to review how the person may be helped with psychotropic medications.  However, comprehensive treatment needs to be addressed from both the mind (psychiatric) and body (physical) standpoints together.  Without this, the patient may feel stigmatized and misunderstood.  It may feel like a judgment – “You are crazy”- rather than a secondary effect of a physical, medical condition.

Unfortunately, many mental health practitioners are not aware of the potential connection between this complex of physical diseases and the manifestation of psychiatric symptoms.   If the origin of the psychiatric symptoms is Lyme or co infection, treatment with psychotropic medications may help, but do not address the underlying medical cause. The four most telling signs that we are not dealing with a “simple” psychiatric condition follow:

1.    if uncharacteristic psychiatric symptoms appeared after infection (if in fact, that can be determined)

2.    if psychotropic medications do not seem to have the expected result, and/or

3.    there is multiple, changing symptomology not usually seen in patients

4.    And there may be roving physical symptoms that run the gamut across several bodily systems, as in nervous, cardiovascular, urinary, reproductive, endocrine, lymphatic, digestive, muscular and skeletal systems.

Another factor affecting outcome is the immediacy of treatment.  If medical treatment for Lyme or co- infections is delayed due to the understanding that the psychiatric symptoms are solely the result of psychological and emotional problems, then treatment of the cause itself is delayed. In that case, Lyme disease itself may still be active and spreading, continuing to do its damage. Such delays in treatment can lead to chronic neurological and other physical problems. It is therefore extremely important for mental health professionals to be aware of the possibility that what looks psychiatric may have its origin in an undiagnosed medical condition.

The Effects of the Controversy

I will only briefly mention the “Lyme controversy”. Many medical professionals disagree on almost all aspects of Lyme disease; there are medical boards that have had long drawn out meetings and conferences about Lyme disease questioning its very existence; there are insurance companies refusing to pay for treatment.

The fact that significant research findings about the disease/s are continuing to be published does not make the controversy any less contentious. Just like Syphilis in previous years, both of these diseases could be called “the great imitator.” Both bacterial diseases can travel throughout the body and affect multiple body systems – including the brain.  “Syphilis psychosis” has similarities to the more severe psychiatric manifestations of Lyme disease and co-infections.  It was similarly misunderstood and misdiagnosed in regard to Syphilis.

Controversies rage as to whether this disease can be passed down from mother to child as well as if it should be considered a sexually transmitted disease.  Considering that a spirochete can pass through the blood brain barrier, it seems plausible that spirochetes can pass through the placenta to the fetus.  That is a topic that should be carefully studies since it has implications for family planning and health.

Many have agreed that aggressive treatment should be initiated as soon as possible, preferably immediately after infection is an individual’s best chance at getting better. Others take a wait and see attitude, waiting for symptoms to appear even though a rash has been observed.

A portion of the medical community focuses on the long term harmful effects of antibiotics.  Unfortunately, some of these same medical professionals do not offer alternatives, either focusing on symptom alleviation or leaving the patient to fend for themselves in uncharted territory.

Some in integrative, holistic or homeopathic medicine suggest a more natural, herbal, homeopathic or holistic approach that minimizes dangerous side-effects of antibiotics and other prescribed medications.

Another aspect of the controversy has to do with the recognition of psychiatric manifestations of Lyme and company.  Many health professionals are identifying that psychological manifestations are truly caused by the Lyme disease and or co-infections; some see that psychiatric disorders that predate onset of infection may be exacerbated once chronic Lyme settles in.  Others deny or are unaware that there could be such a connection between a physical illness and the mental and emotional functioning of a person.

Conclusions and Final Thoughts

Following a review of my own personal experience and studying the data available on the subject of the connection between Lyme disease and psychiatric symptoms, I am convinced that there is a connection.  Spirochetes and other bacteria and viruses multiplying inside the brain could be the basis of a very disturbing horror film!  Not only that: the microbes themselves enter into the sacred territory of our brains and they also produce neuro-toxins which inflame and disrupt function.  When the microbes are killed off neurotoxins are produced that worsen symptoms associated with the function of that particular part of the brain or body!

• Disease Intelligence: This is obviously a very smart disease.  It can change form and make genetic alterations like a magician! It can travel not just in our blood, but through our spinal fluid, attach to our brain matter, enter into other body fluids, go deep into body tissue; basically anywhere it wants to go.
• Disease Spreading:  Research reveals that this is actually becoming a global epidemic.
• Under-diagnosis: Too many cases go undiagnosed or and misdiagnosed before finally getting the correct diagnosis; then so much damage may already be done.
• Increase in Vectors:  There is new research out suggesting that certain birds can actually carry ticks on them; this would help explain the unexpected spread in location. It is also being suggested that coyotes and bear can carry ticks infected with Lyme disease, in addition to deer and mice.  In many areas wild life are making their way back to areas where they used to roam or are being brought into sanctuaries and state parks; this too could be carrying infected ticks all over. Overpopulation and the eradication of burning fields has also promoted the unchallenged growth of the tick population. The result is that more and more people are getting bit by this tiny little tick, sometimes almost too small to see without a magnifying glass.  Lack of knowledge and the difficulty of spotting the intruder add to the risk.
• Medical Treatment: The medical community is divided.  The debate has been emotional, at time leading to intense witch-hunting techniques as in the arrest and fining of Dr. Charles Ray Jones, (Pediatric Lyme specialist of New Haven).  Doctors have been black-mailed, as in the McCarthy days, and run out of business for providing treatment for chronically ill Lyme patients.  This has created a cloud of suspicion, fear and secrecy that is unheard of.  In most recent times the HIV epidemic (in its early stages) was infected with similar emotional, irrational, blaming and attacking dynamics. Doctors in good faith who try to provide help to their suffering patients have operated in fear of their licenses, causing some of them to pull back on treatment.
• Education:  A major priority should be to educate the entire medical community.  The fields that need ongoing illumination are:  psychiatry, chiropractic, neurology, cardiology, dermatology, endocrinology, gastroenterology, infectious disease, neurology, ophthalmology, rheumatology, and primary care practitioners. Each of these specialized fields may be exposed to a particular symptom that has its origin in a microbial infection such as Lyme or co-infection. Treatment of the particular organ or system may yield some temporary results, but not treat the underlying disorder which may then move on to the next organ or system.  Also those in the fields of Primary Care, geriatrics and pediatrics are dealing the most vulnerable on either end of the age spectrum and all in-between.  It is critical that they become aware of the intersection of various disease states and possible bacterial or viral infection.
• Education:  the public.  Lyme disease is an epidemic disease that is quietly and deceptively disabling people one by one without prejudice.  Education would also then help in the actual diagnosis and treatment of the disease. The documentary, Under our Skin is a chilling film about the tradgedy of this complex of diseases.
• In response to the vacuum of affordable, rational diagnosis and treatment of Lyme disease and co-infections, a democratic ground-swell demanding more research and treatment options has emerged. Lyme disease support groups are proliferating, and there is an underground social network that populates, not only facebook, but many blogs, twitters, and other social media.
• Patients are now seeking alternative treatments such as Rife treatments, Chinese herbal treatments, homeopathy, vitamin therapies, the treatment of vitamin deficiencies directly or indirectly caused by the microbial infections.  Hyperbaric Oxygen treatments, infrared saunas, nutritional and exercise programs support the ever-expanding desire to be well, in a larger sense.

Final note: Mental health is not something that should ever be taken lightly. The mind is fragile, and the direct and indirect stressors of Lyme disease and Company can induce feelings of anger, frustration helplessness and alienation.  Suffering from a painful and debilitating disease can be alleviated by an understanding and committed medical and alternative community of health care providers.  Support from other patients from the Lyme network can provide the critical validation that is part of the healing.  Solace and hope are so important in the journey toward healing. Until research, medical and alternative practice offers a more comprehensive and reliable diagnostic and treatment protocol, I take solace in the knowledge that I am not alone.

References

Barbour, Alan G.  M.D. (1996). Lyme Disease; The Cause, the Cure, the Controversy.  Baltimore: John                                                                      Hopkins University Press

Burrascano, Joseph J. JR M.D. (2008). Advanced Topics in Lyme Disease; Diagnosis Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, 16^th Edition.

Lang, D & DeSilva, D M.D. (1993), Coping with Lyme Disease; A Practical Guide To Dealing With Diagnosis And Treatment. New York:  H Holt & Co.

Vanderhoof-Forschner, K. (1997). Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders. New York: John Willer

Andrews, V. (2004). The Psychological Effects Of Lyme Disease; Can a tick bite drive you crazy? Doctors warn that Lyme disease may cause personality changes. Retrieved November, 1, 2009 From IgeneX, Inc web site: http://www.igenex.com/psychological_effects.htm

Bransfield, R M.D. (n.d). The Neuropsychiatric Assessment of Lyme Disease. Retrieved 11/8/2009 from web search: http://www.mentalhealthandillness.com/tnaold.html

Fallon, B M.D., M.P.H. & Nields, J M.D. (1994) Lyme Disease: A Neuropsychiatric Illness. Retrieved on November 20, 2009 from the American Journal of Psychiatry through: http://www.angelfire.com/biz/romarkaraoke/lymeart.html

• Chronic Lyme disease hobbles Spanish Fork woman
• By Carrie A. Moore
• Deseret News
• Published: Sunday, Dec. 27, 2009 8:54 p.m. MST

http://www.deseretnews.com/article/705354505/Lyme-disease-hobbles-Utahn.html?pg=1

Lyme disease takes wing on its spread inland
By Robert Miller, Staff Writer
Published: 09:54 p.m., Monday, December 28, 2009

http://www.washingtonpost.com/wp-dyn/content/article/2010/05/20/AR2010052003038.html

NIH proposes new funding rules to prevent conflicts of interest

By Rob Stein
Friday, May 21, 2010; A16

The National Institutes of Health proposed new guidelines Thursday to prevent financial conflicts of interest among thousands of researchers who receive federal funding, a move long sought by watchdogs of scientific research concerned about the influence of the drug industry and others.

The move, which will affect more than 40,000 researchers, comes amid rising concern about the influence of the pharmaceutical industry and other private-sector interests on scientific research. In a series of high-profile cases, federally funded researchers have received upward of millions of dollars from companies with a financial interest in the outcome of their work.

Among other changes, the new guidelines will reduce from $10,000 to $5,000 the minimum payment that researchers will be required to report and mandate that universities, colleges, research institutes, businesses and other entities that employ researchers who receive NIH funding monitor compliance with the new reporting requirement. Funding information would have to be posted on a publicly accessible Web site. Violators could lose their funding.

“Partnerships between NIH-funded researchers and industry are essential. They have been, and they will be,” NIH Director Francis S. Collins said in announcing the guidelines, which will be subject to 60 days of public comment and possible revision before becoming final. “At the same time, we need to be clear that in order to preserve the public trust in the objectivity of biomedical and behavioral research, all research has to be conducted without bias and with the highest scientific and ethical standards.”

Collins stressed that, in most cases, the integrity of scientific research has not been compromised by outside funding. But even the appearance of a conflict can undermine public trust, he said.

“The public trust in what we do is just essential, and we cannot afford to take any chances with the integrity of the research process,” Collins said.

Universities and professional organizations have been tightening their policies concerning outside funding in recent years to prevent conflicts of interests. The National Academy of Sciences’ Institute of Medicine released a scathing report last year urging doctors to stop accepting money, gifts and free drug samples from drug and medical device companies.

Sen. Charles E. Grassley (R-Iowa), who has been investigating conflicts of interest in federally funded research, welcomed the proposed changes, which he said he planned to review.

“Disclosure of financial relationships and the resulting accountability have been sorely lacking in federally sponsored research,” Grassley said in a statement. “Letting the sun shine in and making information public is basic to building people’s confidence in medicine. And with the taxpayer funding that’s involved, people have a right to know. Public trust and public dollars are at stake.”

Several groups that had been advocating for tougher rules praised the proposal.

“The leaders of the NIH are finally considering seriously an idea they have rejected for years: public disclosure of grantees’ financial arrangements that may create conflicts of interest,” said Ned Feder of the Project on Government Oversight.

Allan Coukell, director of the Pew Prescription Project, a consumer advocacy group, said the rules were a step in the right direction, though there were some shortcomings. The rules should require researchers to report any financial interest, even those less than $5,000, he said. The rules also do not require those receiving more than $250,000 to specify the amount any further.

“From the public’s point of view of trying to assess someone’s financial stake, you’ll have no way of knowing whether they have a $250,000 interest or a $1 million interest,” Coukell said.

A spokesman for PhRMA, which represents the pharmaceutical industry, said the group was reviewing the proposed rules.

I have been researching the work of Dietrict Klinghardt, MD, PhD, for months now, seeking to understand his overall approach and underlying assumptions.  He has been synthesizing traditional and alternative medicine for over 30 years.  He has studied medicine, psychology and spirituality with an over-reaching high level of integrative intelligence .  He has studied the effect of heavy metals, environmental pollutants and electromagnetic effects on the human body. He seeks to understand the underlying factors of dis-ease and share his wisdom with us all.  His work is comprehensive, broad-reaching and at times, erudite.

Dr. Klinghardt is a neurobiologist, an integrative physician and is a leading proponant of holistic treatment. He studies the nervous system in an interdisciplinary way that involves other disciplines such as psychology, computer science, statistics, physics, philosophy and medicine.    He is a fierce advocate for patient self-care; he publishes and teaches his approach in America and Europe to educate us about prevention and natural treatments  so that we all have access to the means of cleansing, balancing and healing ourselves.   His work is , in many respects, consistent with other naturopathic physicians in that he seeks to assist the human body to function optimally through the use of herbs, homeopathic medicine and lifestyle changes.  He has added an energy medicine component for both diagnosis and treatment and is in the forefront in proposing this ancient, and at the same time, newest and most promising approach to healing.

The foundation of his approach is based on his understanding of the five levels of healing. While in India about 30 years ago he went to a lecture given by a Guru (wise man) who talked about an ancient  (12,000 years old) Tibetan philosophy based on an understanding of humans as beings comprised of five different levels: the physical, the electromagnetic, the mental, the intuitive body, and the spirit body.  All but the physical are invisible to the human eye, although some people can “see”, feel or sense fields of energy relating to the other, usually invisible aspects.

The premise that is most fascinating for our purposes is that in order to be well, all levels of the human being must be healed.  This is so because the physical aspect of us is the materiel manifestation of all the other components.  The other four layers interpenetrate with the physical and affect the health of the physical being.

Let’s reference each of these layers and briefly touch on how each of these layers relate to illness.  Let’s say that a person has been diagnosed with Lyme disease.  On a physical level it means that bacterial organisms are multiplying in the body, moving to different parts of the body, generating neuro-toxins which cause symptoms in their own right.  It may be that the physical body has been diagnosed with heavy metal toxicity, for example, mercury, and that the toxins need to be cleared so that the body may more effectively fight it’s battle against the bacterial invaders.  This is the world of orthomolecular and allopathic medicine.  On this level antibiotics may be prescribed to kill off the unwanted organisms, detoxifying herbs given for clearing out the neuro-toxins and by-products of the die-off.

On the second level, the electromagnetic level, it may be seen that the patient has developed an inflammatory response (physical level) that produces inflamed, painful energy in response to the direct effect of the bacteria, or the by-products of their living and dying. This energy may be present in the physical mass of muscles, joints,or organs.  Since pain causes us to contract, resist or avoid, that energy may become stuck or constricted.  Within this model, healing energy work, such as Reiki, Hands on Healing, acupuncture, reflexology, or (in Dietrict Klinghart’s lexicon) Autonomic Response testing may be used.  Through the movement and clearing out of painful, inflamed energy the void is then filled with the natural life force within all human beings; it then has a chance to flow and heal.  Note:  according to this model, the layers below (in this case the physical) are affected positively.

On the third level, the mental body, unresolved emotional conflict creates a disturbance in (what is known in neuroscience as) the bio-photon field which surrounds the body, and is generated by the DNA.

Neuro-science tells us that short term memory is tracked in brain circuitry (first level); according to this way of understanding the human, long term and extrasensory perceptions reside in the energy field that surrounds the body- the physical brain is seen as a “tuner” for memory storage. 

Fritz-Albert Popp, a German physicist pioneered research about the vibrational nature of our cells, and is reported to have confirmed the existence of biophotons which emit tiny quantities of light.  We are beginning to understand how these invisible entities communicate complex information and orchestrate metabolic function.  For details about this go to mercola.com to see an interview of Klinghardt on the subject – fascinating!)

If this Lyme disease patient were to enter into psychotherapy there may be found traumatic, unresolved issues in their own life history, or in the family history that may have been passed on.  This unresolved history is held in the field of energy that surrounds the physical body.  By facing and resolving this (conscious, unconscious or sub-conscious) pain, that then allows a flow and healing of the energy body that would otherwise weigh down or inhibit full healing.

The forth level of healing is identified as the Intuitive body.  It is realm of the shaman, the religious, the spiritual, and your metaphysical experiences.  Dr. Klinghardt postulates that on this level unresolved conflict and trauma from a person’s past and from their history can generate physical illness.  Unless these traumas are faced and resolved, they may act out these unresolved issues in spite of a medical approach dealing only with the physical body.

So for our purposes, with this same Lyme disease patient, if this person, for example, had parents or grandparents who were sexually or physically abused, the unresolved trauma may be carried on the the person’s memory/field of energy;  unless faced, mourned and the associated feelings of anger, rage and despair are released, the effects of the trauma are played out in the present.  Klinghardt developed something he calls Family Constellation work to delve into the family history and therapeutically identify and resolve the trauma.

Our Lyme patient may receive the best treatment for the physical components of Lyme disease, but, according to this model, the patient will be vulnerable to continued illness unless this “contaminating” emotional disability is healed through psychotherapy, family therapy or other uncovering and healing teahniques.

The fifth level of healing, the individual’s connection to the divine, is deeply personal, and is the most important and largest part of the human being.  This is the level of self-healing and relates to the “highest self”.

Klinghardt’s premise is that illness can originate on any of the four lower levels and unless the source of the illness is healed disease will be resistant to healing, or it may transform into another form of disease.  Illness that is treated symptomatically but that does not treat the actual cause of the illness is short-sited and will likely be unsuccessful.

This concludes my summary of Dr. Klinghardt’s work.  I hope you have found it as stimulating and as interesting as I have.  Please let me know what your thoughts are, and send along any questions you may have!

Cynthia

This is news:

Dr. Jeffrey Klass and Dr. Jessica Sedita of Madison Connecticut offer to those of us fortunate enough to live in this area a holistic, complementary healing approach that works at both killing off the microbes (whether they be Babesia, erlichiosis or the Lyme spirochete), but also focuses on clearing and cleansing the toxins that create symptoms as debilitating as the diseases themselves.  (For those of you in other areas of the country, please check internet sources for the same or similar resources, or check with me.)  The area of “vibrational medicine” is a “new” and exciting adjunct to the healing of the person with Lyme disease (and the coinfections).  When combined with the principles of naturopathic medicine, it offers a powerhouse of tools to add to the wellness approach that is at the foreforont of the treatment of Lyme and other coinfections.  Here is a newsflash from Dr. Sedita that I am sure you will find enlightening and helpful:

_{Dr. Jessica Sedita, ND}

Just a few years ago Lyme disease was only heard about once in a while; today the situation is much different. Today the chance of contracting Lyme disease has significantly increased, putting everyone in the northeast at great risk. This condition is becoming much more common than anyone could have ever imagined. Anyone afflicted with Lyme needs to fully understand the condition and its progression. Lyme is an organism in the spirochete family that is similar to syphilis. It is transmitted through a bite by an infected deer tick. Once infected, a person will experience flu like symptoms as the immune system attempts to fight off the invader.

One could assume that they would be sick for a few days or a week while the immune system fights of the infection then leading to a full recovery. Unfortunately this is not how the events unfold at all. The Lyme spirochete is able to evade the immune system so most of the time it is not completely killed off. This allows the Lyme to roam free and proliferate in the body undetected for years. The longer it is present in the system the more time it has to set up colonies all over the body. Once it has left the blood stream and traveled to multiple areas it is said to have progressed from acute to chronic Lyme. During periods of stress, physical or emotional, the immune system becomes suppressed and the Lyme is able to further advance and colonize new areas of the body. This is why many patients will notice a flare-up in symptoms during or shortly after even small periods of stress.

The array of symptoms Lyme can produce are so numerous and constantly changing many people think they are imaging it. Lyme can imitate almost any disease that exists and should be considered as a possible diagnosis of any condition that is not resolving with treatment. Lyme can mimic various conditions such as fibromyalgia, chronic fatigue, bells palsy, ADD, MS, ALS, RA, migraines and any other autoimmune diseases. Lyme produces a significant amount of inflammation in numerous areas and organ systems of the body. The majority of the inflammation is due to the secretion of a neurotoxin produced by the Lyme that travels around the body which puts stress on all organ systems. The Lyme and its neurotoxin can pass through to the brain with the potential to cause encephalopathy and meningitis, which is swelling and inflammation of the brain. The exposure to the neurotoxin over time can cause liver dysfunction, fatigue, headaches, mental confusion, muscle and joint pain. These symptoms can indicate possible dysfunction in other regulatory organs such as the thyroid, hypothalamus and adrenals. All of these symptoms can come and go just a quickly as they appeared or they may persist and there could even be periods that are symptom free. Many people think the symptom free periods are when they have finished their battle with Lyme and won. But that is not correct. Often when there is a remission in symptoms it can mean the immune system is not actively fighting off the Lyme. This leaves it free to travel around the body causing inflammation, dysfunction and then ultimately hiding so the immune system can not destroy it.

Many patients are lead to believe that after being infected with Lyme all that needs to be done is take antibiotics for a few months or even a few weeks and then they will be cured. This may have been enough to treat Lyme in the past but currently for most patients this often is not effective enough to provide a full and complete recovery. Antibiotics are commonly prescribed in all stage of Lyme disease. They can bring a person from acutely ill to a stable point. There are however a few drawbacks to treatment with antibiotics alone. They are often unable to kill off the disease completely. The presence of the antibiotics stimulates a defensive mechanism causing the Lyme to become dormant and will avoid being killed. This change to the dormant state is called the cystic form of Lyme. In this form, a protective coating is formed around a group of spirochetes. This coating protects the Lyme by not allowing the antibiotics to penetrate.

They are also only able to kill the Lyme when it is in the active form in the blood stream.

In the cystic form it is able to move deeper into the body and wait until it senses the absence of the antibiotics. Once the antibiotics have left the body the Lyme will become active again and move back into the blood stream and begin multiplying again. This migration

back to the active form can cause a sudden spike or relapse of intense symptoms. While the Lyme is in the cystic form a person can be symptomatic or still extremely ill. Since antibiotics are not able to access other areas well outside of the blood stream the cysts are left to hang out all over the body producing symptoms. The specific symptoms that are experienced are often dependent on what areas in the body the cysts have traveled to.

As if Lyme alone is not enough there are a myriad of other organisms that the tick can be harboring and transmitting during the bite. These other organisms consist of Mycoplasma, Ehrlichia, Babesia and Bartonella, known as the co-infections. The co-infections are commonly present in people with Lyme disease. They can add to the array of confusing symptoms by further stressing the immune system and increasing the overall number of pathogenic organisms in the body. In a large number of cases antibiotics are not able to eradicate any of these organisms from the system completely. They are able to hide in the body, mutate and evade the antibiotics and the immune system. Having all or even just one of these co-infections in addition to the Lyme can complicate the case significantly.

Guilford Holistic Health Practitioners

^{5 Durham Rd Bld 2, Suite B-6}

^{Guilford, CT 06437}

^{(203) 453-1906}

Send any questions, or topic suggestions for future issues to: drsedita@gmail.com

Reference

Rosner, Bryan. When Antibiotics Fail…Lyme Disease and Rife Machines.

2004.