Three is the Magic Number

Tomorrow I will receive my third treatment. In many religions and philosophies, three is the magic number. Two weeks ago I started treatment with the Doug Coil machine, a type of Rife Machine. It generates frequencies that kill and disrupt viruses and bacteria, and possibly malignant cells. All living things contain iron and respond to vibration. My husband Clay followed exact directions and built the Doug Coil machine.

The machine with all its components weighs well over a hundred pounds. Clay carted it to Georgia so that I could have my first treatment. I was advised by proficient Coil users that the first treatment should only last for 15 seconds. Clay stopped the machine at 14 seconds. (Would that one second have put me over the edge, who knows?)

As expected, I had a Herzenheimer reaction within 36 hours, (toxicity from dying bacteria). Saturday evening I shut out all the lights, went to bed, moaned a bit, and stayed there for nine hours. Not so bad really, only a 25% increase in my normal pain.

Clay packed the contraption up, hauled it back to Florida, and gave me another treatment a week later. This time we doubled the time, 30 seconds. It seemed an eternity. Not that the treatment was uncomfortable, just tension from the unknown. Right on schedule, I started Herzing in 24 hours. My pain increased again about 25% and stayed persistent for three days.

To combat the toxic reaction I take Glucomannan with olive oil and Chlorella. They are binders and help with detoxification. I am also watching my diet. I eat lots of greens and veggies, about 75% raw. I added fresh-juiced carrots and other assorted veggies to my diet about a month ago, and milk thistle capsules. My hope is that all of this will support my liver throughout the course of treatment.

As to the positive affects, it is way too soon to expect much. We have been warned that this process could take months, even years, for success. Surprisingly though, I am sleeping better since we started. I have also felt a glimmer of anticipation arise, something akin to hope, like effervescent joy bubbling to the surface. Despite a concerted effort, this type of positively has escaped me for years. Dealing with unexplained illness can do that.

Another positive sign, the fact that I am writing, is significant. Nothing makes me feel better than sitting at my computer and putting words out in the ether. That hasn’t happened for way too long. My blogs are stagnant, and my latest novel is wilting away. The treatment I am anticipating the most is when I get to hold the coil on my brain. More than anything, I miss being able to think clearly. The spirochete (Lyme disease bacteria) likes to hide in the brain where blood flow is minimal.  In that way it is very similiar to syphlis.

My next treatment will be the third one. We will increase the time to one full minute. I can’t wait! The more bugs I kill, the happier I am.

More later….

Posted in Uncategorized | 7 Comments

A Leap into the Relatively Unknown

“So how are you doing?” The beautician asks as she drapes the cape over my shoulders. Her vibrant smile is sincere.
“Not so good.” I say softly. The question is awkward and intimidating. I want to be truthful, but it is not a good day for me physically or emotionally. I truly hate the redundancy of complaining, but the pain is constant and my fatigue is overwhelming. I am loosing confidence and fighting depression.

She misunderstands my answer. “Oh, that’s nice.” She says, bubbling with enthusiasm, Her smile is even broader as she leans closer to begin the color treatment.
I force a grin. She makes an encouraging remark and praises me for my good attitude. Funny thing…I am smiling now. Nothing works better than a smile to uplift the spirits. Considering my recent challenges, I thank her for her concern.

For the past few months my life has been in a quandary. My illness has intensified. After a decade of searching for answers, I am off again on yet another path. I intended to blog more often. My mental confusion has kept me away from the keyboard. How do I explain to my readers what I do not understand myself? For over eight years I have researched Fibromyalgia and Chronic Fatigue Syndrome (FC/FS). I began this blog as an outlet to share both information and hope with fellow sufferers. On my last blog entry I explained that my diagnosis had changed from FM/CFS to Chronic Lyme disease.

The symptoms for FM/CFS are almost exactly the same as those of Lyme disease. Neither disease has a definitive diagnostic technique.

I sent my tests and reports to Dr. Tietelbaum’s assistant in Maryland for a second opinion. As mentioned in earlier blogs, Dr. Tietelbaum, author of From Fatigued to Fantastic, is the FM/CFS guru in this country. That was over two months ago. I contacted them after one month and inquired about the second opinion. They apologized and said they would look into it, a month later, nothing. I suspect I have been discarded into a slush-pile. I won’t contact them again.

After taking the Ecuadorian microbial herbs that Dr. Kalidas prescribed to kill the Lyme bacteria for five weeks, I had no reaction. Then, Dr. Kalidas put me on colloidal silver. About a week later, I had my first Herzheimer reaction (a die off of bacteria.) Not a fun experience. A sure way to diagnose Lyme is to experience a die off of the bacteria. For the next few days I could not support my body weight, or hardly stand. I could not walk without support. The pain doubled. Dr. Kalidas told me the reaction was definitive proof that I have Lyme disease. He suggested I cut the dose of colloidal silver in half. He also suggested I schedule my next appointment for after he attended a conference on Lyme disease this November. I felt abandoned and confused.

In the meantime, my husband and I continued our online research. The more we looked into Lyme, the more we uncovered the controversy surrounding Chronic Lyme disease. Bottom line, medical doctors don’t want to treat Chronic Lyme. The IDSA, The Infectious Disease Society of America, has pretty much poo-pooed the concept of Chronic Lyme disease. According to the IDSA, a course of high dose antibiotics will cure Lyme. If the symptoms persist, then the patient is no doubt a hypochondriac.

However, many reliable research facilities all over the world have proven that Chronic Lyme does exist. Early detection, with a target shaped rash, can be treated and possibly cured with antibiotics. Undetected Lyme, where the rash is not visible or not noticed, becomes Chronic Lyme. Only 70% of people even get the rash. The longer it goes untreated the deeper the bacteria penetrate into the cells. At that point, killing the bacteria becomes a game of catch me if you can. No doubt my Lyme is Chronic. I have had these symptoms for a decade.

The Lyme bacterium is only vulnerable in the spirochete state. The Lyme bacterium also takes other forms, round bodies or cyst forms. In those states they are impregnable. When the spirochete is attacked it immediately morphs into a round body or cyst form. As a cyst it is indestructible and cannot be killed. So, when the antibiotics start working, the bacteria morphs and the antibiotics are useless. The insidious spirochete waits until the coast is clear, and then it leaves the cyst form and reappears in larger numbers. It multiplies in the cyst form.

Of course, health insurance companies support the IDSA guidelines that antibiotics will work. It appears antibiotics only work in early cases where the rash is visible. We have spoken to Lyme patients who have been through numerous intravenous antibiotics and still suffer relapses. Insurance companies do not want to accept ongoing expensive lifetime treatment plans. So, finding a physician able and willing to treat Chronic Lyme is a challenge.

The award winning documentary film, Under Our Skins, (available on Netflix and online) exposes the controversy in the medical community. Sadly, Lyme disease sufferers are unable to get the help they need in the conventional theater.

However, research by the alternative health communities is moving forward. My husband has made contact through the internet with several individuals who claim to have cured their diseases. Right or wrong, they are eager to share information and help others. After comparing many alternative treatments, we investigated frequency-generating machines, such as the Rife machine and the Doug Coil machine. (You can Google either, the internet is full of information on frequency generation machines.)

The explanation of how these machines work is another whole discourse. Simply put, they generate electronic frequencies. All living organisms contain iron and exist at a certain frequency. Change that frequency dramatically and the organism dies. In the case of Lyme disease, choose the frequency recommended, and the spirochete bacteria will die.

Of course, when the spirochetes die the patient deals with a Herzheimer detoxification reaction. The severity of the illness depends on how many bacteria die and release toxins into the system. Not all of the spirochetes will die. Many will morph into the cyst form and wait out the attack.

The challenge is to know when the spirochete reappears, and hit them with the frequency again, and wait for the reaction. Each time it is expected that the spirochete will diminish until the patient is cured. The system is different with each person. It is a trial and error procedure. You start slow and gradually increase time exposed to the machine and how often you repeat the procedure.

In theory, these machines, (and there are many), can be used for all sorts of illnesses where cells, bacteria, viruses, etc., can be eliminated through frequency generation. The treatment is controversial, and not American Medical Association (AMA) approved. Neither my husband nor myself are physicians or medical experts. We are not qualified to recommend this treatment for anyone.

In the past two months we have spoken to numerous fellow sufferers who claim to be healed through the use of the Coil machine. We are desperate, and made the choice to give it a try for ourselves. I will start using the machine next week. If I am able I will report back on this blog to share the results as they occur.

Posted in Uncategorized | Tagged , , , | 2 Comments

Another Fork in the Stream

This is awkward ….an about-face in midstream, or at least paddling in circles. My new doctor ordered a myriad of tests. He reviewed not only blood work, but also chemical, metabolic, hormonal, and even genetic testing, from every known bodily function. They were taken last month as a diagnostic procedure.

For the past 8-9 years I have been battling Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS). The first diagnosis I received came from a Rheumatologist. After the traditional pressure point test, the Fibromyalgia diagnosis was given. I happen to know that just about every patient who walked through his door was given the same diagnosis. Another interesting point, his Cymbalta and Lyrica sales are the highest in the district. The drug companies are generous with accolades for top sales. Cruises to the Mediterranean are common.

Years ago, after considerable research, I decided the standard pressure point test for FM/CFS was useless. Most current research has not given the test much validity either. I also discovered, despite research to the contrary, medical doctors, as a rule, do not give FM/CFS much validity as a distinct illness, as they commonly refer to a FM/CFS diagnosis as a disorder of omission. Hence, we have the conundrum of diagnosis.

To date, FM/CFS have no definitive diagnosis. Not to say they are not legitimate illnesses. As a result, many respectable organizations have arisen out of the need to research and support FM/CFS patients.

My personal challenge has taken me all over the world in search of answers. The purpose of this blog is to share that journey, which for the most part, has had me swimming against the current.

Back to the recent testing. After all this, the latest doctor was convinced that I do not
have FM/CFS. “You have Lyme disease”, he said, pompously. At that point, I felt the need for another opinion. The tests, all 9 pages, are currently on their way to see Dr. Tietelbaum’s assistant in MD. As mentioned in earlier blogs, Dr. Tietelbaum, author of From Fatigued to Fantastic, is the FM/CFS guru in this country.

While I await his verdict, I am following my current doctors advice and preparing to treat the Lyme disease. This involves clearing out other infections and boosting my immune system. This must be done first before the process of killing the Borrelia bacteria begins. The die off of the bacteria is brutal on the system, and must be done slowly as the symptoms become more severe during the treatment. (Yippy!)

Lyme disease is the most commonly reported vectorborne illness in the U.S, it is contracted from a deer tick bite.  A deer tick is about the size of a poppy seed.  Like FM/CFS it is difficult to diagnosis.  About 70% of those infected never see or feel the bite.  The commonly referred to target rash is not always present.  Some controvery exists as to the statistics on Lyme disease. Some say it is a more prevelent epidemic than AIDS. The Center for Disease Control has not updated their statistics since 2010.

The bacteria, is a spirochete (Borrelia burgdorferi), which affects just about every part of the body including the brain and heart. The symptoms mimic many diseases. It is often misdiagnosed. More information is available on http://www.LymeDiseaseAssociation.org and http://www.LymePa.org , as well as numerous other web sites you can Google.

So, as a result of this latest diagnosis, my situation is in flux. I am happy to continue to report my findings on this blog.

Posted in Uncategorized | Tagged , , | Leave a comment

One Visit Down …..More to Come

Dr. Kalidas came recommended by Dr. Tietelbaum. Dr. Jacob Tieltebaum wrote the well-known books on Fibromyalgia and Chronic Fatigue Syndrome (FM/CFS), From Fatigued to Fantastic, three additions to date. Dr. Tietelbaum has offered courses on his protocol and Dr. Kalidas has taken his course.
Dr. Kalidas practices at the Center For Integrative Medicine in Orlando, FL  http://www.drkalidas.com  They treat patients with both natural/alternative treatments and with medical treatments when if necessary.
I will be chronicling my treatment at the Center For Integrative Medicine in general terms. I want to share the experience, not my personal health issues. I knew at the onset this would be a challenge; yet everyday is a challenge with FM/CFS.
For the past several years I have researched Dr. Johan Bauer in Switzerland and his treatment for FM/CFS.  http://www.fms-bauer.com  His approach is unconventional surgery. His quadrant pain intervention releases the compressed nerves that cause FM symptoms. His results have been good. (See previous posts regarding my personal experience with compressed nerves.)
Over the past 6 months I have followed the progress of several of his patients, both through personal messaging and Facebook. A Facebook Page http://www.facebook.com/home.php#!/FibromyalgiaEndsHere  focuses on Dr. Bauer’s patients and their stories. I have not ruled out a trip to see Dr. Bauer in the coming year.
For now, I will focus on Dr. Kalidas’s treatment. He is close enough geographically to be practical, and I am in desperate need of help. Besides, I suspect that something must be seriously out of balance in a person to cause the build up of fibrous materials that compress nerves and cause the symptoms of FM in the first place.
On my first visit to Dr. Kalidas he did a comprehensive ninety-minute consultation with Clay, (my husband), and myself. Prior to the appointment, I filled out an entire booklet of questions, over 20 pages. After the consultation the doctor did a brief Physical examination. Dr. Kalidas stated enthusiastically that he believed that he could help me.
According to Dr. Kalidas’s projections, if I follow his treatment plan and tests, I could be back to good health in ten months. Both Clay and I agreed to give it a try.
Since most alternative practitioners are not covered by health insurance and do not accept Medicare, the cost can be prohibitive. In his practice Dr. Kalidas is both medical and alternative. I will file my insurance and hope that at least some of the claims will be covered. That remains to be seen. All costs are paid up front at the time of the visit.
To start, I was given a list of numerous tests to be completed by our next visit, which would be scheduled for one month. The office furnished kits for saliva testing, since hormonal imbalances are not conclusive in the blood. Another kit was provided to check the stool for parasites, yeast, and digestive problems. These would be completed by me and mailed to the lab. (Yuck!)
The following week I took the 2 pages of blood work to Lab Corp. It seemed as if I lost at least a pint of blood that day. Some of the blood tests required special vials, which Lab Corp put on order. They are yet to be completed.
Next week, I have an appointment with a cardiologist. Dr. Kalidas wants the report on my rapid heat beat, chest pain, etc. I have yet to find a doctor to order an abdominal sonogram, which Dr. Kalidas requested. Dr. Kalidas will check the blood work for markers that indicate a need for a Lyme Disease test and other abnormalities.
All of this comprises a good start. I will keep you posted.

Posted in Uncategorized | Tagged | Leave a comment

Another Dissertation and Update on Fibromyalgia Treatment

As I sit here staring at the floors I intend to scrub sometime later today, I reflect on my past week. Like so many weeks in the past 8 years, I have been out of commission due to the pain associated with Fibromyalgia. My poor husband, who never dreamed of doing housework, now does the dishes almost every evening. We have missed way too many family events due to my illness.

My instinct is to say, “My Fibro…”. But, I reject the notion that this horrid disorder is mine or has me. I do not want it, and I am on a personal quest to disconnect from Fibro and reclaim my life.

After too many doctors and a myriad of tests, I am still seeking answers. Sufferers of Fibromyalgia know what I am saying. Fortunately, many of you are coming forward to bring this insidious disorder to light. We need to share. This may be the best way to combat this disease.

Last week I consulted a medical foot specialist to view and interpret an MRI of my ankle. I suspected that a fibrous material was interfering with the nerves at major acupuncture points in the ankle. The debilitating pain I experience in my left calf and ankle could be caused by that interference. To date no radiologist has been able to read the nerve disorder in the MRI. Nerves are difficult if not impossible to see on an MRI. The foot specialist agreed that the nerves could be compressed despite the blurred images. He did not discourage me from consulting Dr. Bauer for Quadrant Pain Intervention, a possible answer to the problem.

Quadrant Pain Intervention claims to free nerves compressed by fibrous tissue. So, I am considering Dr. Bauer’s treatment among other things. Several of Dr. Bauer’s current patients have posted their progress on http://www.facebook.com/home.php#!/FibromyalgiaEndsHere

Aside from seeking traditional medical help, I am currently seeing a Chiropractor who claims all of my symptoms are coming from herniated discs in my back and neck. This doctor uses a machine, the DX9000, to decompress the discs. So I am trying the DX9000. I will report back on my progress.

In the meantime, I will continue my investigations online. Recently, an internet search turned up several clinics that treat Fibromyalgia exclusively. One chain of clinics is called Chronicity. Originally, Chronicity was affiliated with Dr. Jacob Teitelbaum, a well-known specialist for FM/CFS with offices in Hawaii and Maryland, http://www.endfatigue.com/practitioner-list/. Although they claim to use Dr. Teiltelbaum’s protocol, Chronicity is no longer affiliated directly with Dr. Teitelbaum. They are way too expensive and require upfront payments before treatments begin.

After reading and studying Dr. Teitelbaum’s books, I have already put much of his protocol into practice. To date, despite diet and supplements, my progress has not improved substantially. Perhaps, I need guidance from a practitioner of Dr. Teitelbaum’s work.  His nurse consults via telephone from MD for a considerable fee.  I am considering that possibility. 

Another center that uses Teitelbaum’s protocol is The Center for Natural and Integrative Medicine in Orlando FL, http://www.drkalidas.com/forms.html . They also require a large fee prior to treatment. Their fee is a bit more manageable than Chronicity.

Other alternatives have presented themselves along the way. For those who are open to a broadminded and less traditional approach, consider Tapping for Pain. http://www.tapintoyourlife.com/ I am currently experimenting with this technique. Susan Somerset-Webb, a Tapping therapist, also endorses a technique called Psych K to reach the subconscious. The subconscious mind controls about 85% of everything that occurs in the human body. http://psych-k.com/ I am giving Psych-K a try as well.

My future posts will cover my experiences with all of the above. I hope they will shed light on what treatments are available.  I look forward to your comments regarding these and other treatments, traditional and alternative.  Confusion and frustration go hand in hand with Fibromyalgia. What to do next?

If we stay connected, we can find answers.  We can beat Fibromyalgia once and for all!

Posted in Uncategorized | 4 Comments

Challenging Fibromyalgia Treatment

Chronic suffering is an innovator.  When the current treatment for Fibromyalgia did not work, nothing remained for me, but to think outside the box.  I had tried it all.  My experience with nutritional supplements, diet, alternative medicine, and exercise, did not bring relief.  Drugs only brought temporary relief while the side effects added to the misery. 

It is time to move on.  I challenge an American Neurosurgeon to re-evaluate past options.  Fibromyalgia is not psychosomatic.   Too many people suffer from this insidious disorder to be ignored.  Many doctors refuse treatment to the afflicted due to lack of success.   Isn’t anyone in this country paying attention?

In Switzerland, Dr. Dr. Professor Johann Bauer has been paying attention.  www.fms-bauer.com His approach to Fibromyalgia is Quadrant Pain Intervention, a pro-active treatment that gets results.  His operation statistics are impressive.  Rather than experimentation with drugs, Dr. Bauer performs a minor surgery to release the compressed nerve.  Why hasn’t the medical community in this country looked into Dr. Bauer’s research?

Some years ago I lost the use of my right hand.  The neurosurgeon said my symptoms were not typical for Carpal Tunnel, and he refused to operate.  Another surgeon agreed to do exploratory surgery on my wrist.  What he discovered astonished him.  I had a fibrous growth on the nerve that went up my arm.  He removed the growth and sent it in for a biopsy.  It was not malignant, so case closed.  My hand healed even though the doctor admitted he had never seen anything like it.

My Fibromyalgia was diagnosed 8 years ago.  Pain in my left leg, the calf, ankle, and foot, have kept me debilitated for far too long.  Since no neurosurgeon in this country has investigated Dr. Bauer’s procedure, I am forced to travel all the to Switzerland to receive help.

Dr. Bauer performs a surgery that removes offending fibrous tissue from restricting nerves near acupuncture points.  The healing takes time, but it is permanent and drug free, like my wrist.

I challenge a neurosurgeon to study and observe this procedure.  I am going to Switzerland in the coming months.  If I need to be a case study, I am willing.  I intend to document the entire experience.  I only wish an American neurosurgeon had the courage to do the same.  Patients would line up in the thousands to see such a doctor.

If there is anyone out there who knows an open minded neurosurgeon.  Please draw their attention to this blog.

Posted in Uncategorized | 5 Comments