In 1990 I was 51 years of age and living with my wife and three daughters on lakefront property in rural South Alabama. I was president of an investment brokerage firm based in Pensacola, Florida, which I had founded 13 years earlier. I did not take good health for granted but exercised regularly with weightlifting, running, cycling, swimming, and hiking. I was a believer in proper diet and nutritional supplementation. An avid reader, I had read Pearson and Shaw’s Life Extension, Linus Pauling’s How to Life Longer and Feel Better, and others. At six feet, four and a half inches in height and a rock solid 235 pounds, I visibly practiced what I preached. Routine physicals described me as in “excellent health” . . . until the fateful month of June 1990. What followed became an all encompassing nightmare straight from the very pits of hell.
My first indication of something being “not quite right” was a feeling of malaise that I thought was some kind of summer flu. I took a short vacation to the Caribbean thinking the rest would help me. An episode of syncope while there got my attention. Others followed after returning home. A feeling of “you are about to pass out.” Spooky. Attempts at exercise left me extremely fatigued. One evening at dinner a few weeks later my heart suddenly became about 70% weaker and my family rushed me to a local emergency room. I was gasping for breath and both arms were numb. Heart attack I thought! While in the E.R. connected to the monitors I could feel what felt like electric shocks shooting through my chest. The physician on duty assured me that I was not having a M.I. but he did not know what was causing my discomfort. I was placed in intensive care and monitored throughout the night. A stress test was performed the next day and was abnormal. I was released, told not to exercise, and was referred to a cardiologist in Pensacola.
I was hospitalized in Pensacola several days later and the usual battery of cardiac tests were performed. Echocardiogram, thallium stress test, etc., and finally culminating in the invasive procedure cardiac catherization. The doctors could find nothing significantly wrong and I was diagnosed as having occult hypertension that may have caused a thickening of my heart muscle. A Beta-blocker and Prozac were prescribed and I was discharged. I had no other symptoms other than the heart weakness.
I tried to return to work and my normal activities but the symptoms continued to worsen. Several weeks later I was again hospitalized in Pensacola and more tests were performed. The first cardiologist was fired by me and I was examined by cardiologist number two. In addition to a battery of tests including thyroid function, glucose tolerance, and a full rheumatology work up, a second echocardiogram was performed and the new cardiologist explained the results to me. The wall of my heart that was akinetic (not moving) in the first echo had begun moving again by the time of the second echo. He felt that I most likely had suffered a viral infection of the heart muscle and it appeared I was recovering. He told me not to take the blood pressure medication anymore and I would be discharged since there was nothing else they could do for me. My sedimentation rate, typically high with a bacterial infection, was very low, about a three or four as I recall. The only abnormal blood tests were an elevated anti-nuclear antibody test (ANA) and slightly elevated liver enzymes. This was puzzling to the new cardiologist but he had no explanation. Discharge diagnosis was myocarditis and cardiomyopathy with a guarded prognosis. Wow! Even though extremely weak and suffering with tachycardia and frequent spells of syncope, I returned to work. Thinking the attacking villain was some sort of virus, I followed Linus Pauling’s advice of ingesting vitamin C every few hours to the bowel tolerance level. For me this was about 30,000 milligrams of Vitamin C a day. Very slowly, over a period of many months, I improved. Finally I hit my plateau at about 85% - 90% of my former stamina about four years later.
Then in 1998, the heart problems recurred along with symptoms of central nervous system involvement. I experienced ataxia, paresthesias, symptoms of encephalitis and meningitis, peripheral neuropathies, etc. A constellation of other bizarre symptoms began appearing and the usual round robin of doctors’ visits, referrals, tests, disappointments, and frustrations continued. By January 2000, I had seen twenty-four doctors representing a kaleidoscope of specialties. I had lost 53 pounds and the crushing fatigue told me I was near death. I diagnosed myself with Lyme disease and demanded to be treated with IV antibiotics. My internist agreed and thirty minutes later I was in a hospital with a nurse inserting a needle for the infusion of IV Rocephin into my arm. The massive Herxheimer reaction I experienced 1 ½ hours later was diagnostic-DX Lyme Disease! Conventional Western Blot Tests for Lyme done previously and subsequently, (nine as I recall) were negative with only the #41 band being positive. The diagnosis was clinical and was subsequently confirmed by a Lyme literate physician (L.L.M.D.) with Lyme urine antigen and the Plasmid-B (Burgdorferi Lyme DNA).
This began 3 ½ years of antibiotic therapy and tests for co-infections. All tests for co-infections were negative, however Babesia was presumed because of my symptomatology and I was treated three times with Mepron and oral Zithromax. The A/B (antibiotics) used included a staggering (and expensive) 136 infusions of Rocephin (2 GM), 73 Zithromax infusions (500 MG), sixteen weeks of I.M. bicillin, and a host of oral A/B. The torturous journey through the world of A/B therapy, P.I.C.C. lines and home health nurses had been completed. I was clinically improved but still sick.
It is my opinion as of this writing that A/B alone will not cure late stage Lyme disease. Frequently however with proper A/B treatment, the patient will be able to resume most normal activities and co-exist with the remaining infection (s) and resulting symptoms. Failure to treat Lyme and possible co-infections would most probably eventually result in the death of the patient.
In June of 2003, after 3 ½ years of very aggressive A/B therapy, I abruptly stopped all A/B and began treating myself with an EMEM 5 Rife machine. I experienced immediate Herxheimer reactions to the treatments followed by a level of well being and improvement unattained previously by A/B therapy. After four months of Rife therapy, I began a detoxification program utilizing a selection of herbs, vitamins, and minerals. These were combined with the ingestion of two capsules of TOA free Cats Claw per day. Very pronounced Herxheimer reactions began within 24 hours. Also, the appearance of pus filled lesions on my face, arm, and leg, diarrhea, a swollen and tender lymph node and then, very rapid improvement. Myalgias, weakness and fatigue faded very quickly. Approximately 1½ months later I began taking the herb Artemisinin for treatment of the Babesia infection. Response was rapid with Herxheimer type symptoms, followed by improvement. It is estimated by some that approximately six months of Artemisinin therapy is required to clear the infection.
What To Do
If you are suffering from suspected symptoms of Lyme disease, fibromyalgia, chronic fatigue syndrome, or have been diagnosed with or suspected of having the following: Multiple Sclerosis, Amyotrophic Lateral Sclerosis, Parkinsons Disease, or Alzheimers, etc., use the internet to locate the nearest Lyme disease support group. Typically these are listed as "Lyme Disease Support Group of “state, town, or region.” Make contact with the representative(s) of that group and obtain the name, address, and phone numbers of the Lyme Literate Medical Doctor for that area and secure an appointment as soon as possible. Be sure to take any and all medical records you may have available as well as a list of any supplements you are taking.
It was my experience that medical doctors who were not knowledgeable about Lyme were a waste of my time and money. Following the advice of some of them could result in your death if you have Lyme or co-infections. In my experience, doctors were generally of three types:
1. Sincere, caring, and concerned but unfamiliar with Lyme and associated disease symptomatology. Not able to identify your problem and unqualified to treat if Lyme is suspected or identified. These types are typically family practitioners.
2. Arrogant, egotistical, self-anointed “know it alls.” They usually say, “Lyme disease doesn’t exist in the south. I have spoken. You are just depressed. I have spoken. Don’t argue with me, I have spoken, etc., etc.” These types are usually “specialists” in their chosen fields, i.e. neurologists, rheumatologists, cardiologists, infectious disease, etc. These doctors are very dangerous indeed because they typically represent the pinnacle of authority and credibility. How many Lyme patients have suffered years of misery before finally dying as a result of not seeking additional opinions for their sickness because they “trusted the specialist” and felt any further searching for answers would have been futile. Avoid these types totally if at all possible. Otherwise, be prepared to begin listing your pallbearers and hanging black crepe around your house.
3. Finally, the don’t know, don’t care types. These are typically found in busy clinics or hospital emergency rooms. Basic tests will be performed and you will be summarily ignored when the tests reveal nothing. Anti-depressants may be prescribed or a referral to a psychiatrist may be recommended. The environment is assembly line medicine. Take a number and wait. When seen, the doctor will seem preoccupied with other concerns and your visit will rarely exceed eight minutes of duration.
Notable and Quotable: Doctor's Comments to Me
“We don’t have Lyme disease in the South.” “If your Lyme tests were negative you don’t have Lyme.” But Doctor, why am I improving on Rocephin? “Placebo effect, the well known Placebo effect.” “You are just depressed.” “It is all in your head.” “There is absolutely no evidence you have any kind of infection whatsoever.” "You need to stop thinking about all that and move on with your life.” “If there was anything wrong with you it would have shown up in those tests we ran.” Another cutie… The doctor is walking down the hospital hall towards me holding my test results and chart as he emphatically spells aloud the word “N O R M A L.” My personal favorite: I was referred by my internist to a prominent infectious disease specialist because of a presumed infection. Below is the exchange of dialog between the doctor and myself after he examined me. “Mr. Roberts, you are the healthiest man your age I have ever seen. You need to go home, stop seeing doctors, seek professional counseling for your depression and take St. John’s Wort.” But aren’t you going to test me for Lyme disease? “No.” Are you going to test me for any other infectious disease you can think of? “No.”
Symptoms A partial list of symptoms I experienced during the course of my disease:
Severe fatigue Altered Sense of Smell Irregular heartbeat Facial Numbness Tachycardia Severe Insomnia Shortness of Breath Neck Pain Fever – Chills – Night sweats Lower Back Pain (muscle) Skin Rashes Spinal Pain (bone) Ataxia Ringing in Ears Weaknness Nausea Muscle Pain and Atrophy Gastritis Bladder Irritation/Frequent Urination Listing to Left when Walking Joint Pains Muscle Twitching Trembling Frequent Sore Throats Nervous & Jittery Hypersensitivity to Noise Sensation of Body about to “Lock Up” Eye Pain - Photophobia Jarring Sensations in Spine when walking Headaches Weight Loss (24% of body weight!) Dizziness Testicular Pain Severe Depression Mental Confusion and Forgetfulness Prostate pain Musical Hallucinations Jaw & Teeth pain Blurred Vision/Unable to Focus/Stars Balance problems Numbness and Tingling in Hands, Arms, Legs, and Feet Altered Taste Sensations
Lyme Disease is a very serious disease that is frequently debilitating and can even be fatal, especially if the victim is co-infected with Ehrlichia or Babesia. If you have Lyme disease you are suffering from one or more of the following types of infections: Spirochetal, Parasitic, Bacterial, or Fungal. The more of these infections you have, the sicker you are. Other people, even well meaning physicians, family members, and friends usually do not understand why you are chronically ill and your constant complaints of bizarre symptoms make no sense to them. Especially if a definitive diagnosis is lacking, these people are prone to ascribe your problems to some sort of psychosomatic disorder. Anti-depressants will be prescribed and professional counseling will be suggested.
DO NOT LISTEN TO THESE PEOPLE! They will only confuse you further and depress you even more than you already are. They can be as toxic as the germs that are ravaging your body and should be avoided. It is true that depression can be a manifestation of your disease. It is NOT true that your disease is a manifestation of your depression. Do Not Give Up! The answers are out there somewhere. Just because you are not well today does not mean you will not be well tomorrow. Do not be afraid to investigate alternative treatments, supplements, modalities, and protocols. Some of those that were decidedly “out of the box” were very beneficial for me.
The following is a list of what worked and did not work for me. This is meant as a guide only. Just because it did not help me does not mean it will not help you. However, I feel that most Lyme patients have had basically the same responses and have experienced similar results as myself. I realize that some, perhaps, many of the items on my list will be disturbing to some people. Please don’t shoot the messenger. It is my story and I am only reporting what happened to me.
Efficacy of Treatments, Protocols, Therapies, Modalities, Supplementation for My Stage 3 Lyme Disease
Of No Discernible Benefit
Alpha-Lipoic Acid Keflex
Bactrim Mannatech Products
Barley Grass Mild Silver Protein (oral)
Beta 1-3 Glucan Miracle II Products
Celebrex Noni Juice “Real Tahiti”
Chelation – I.V. EDTA Olive Leaf Extract
Chelation – Oral – Chemet Olive Oil “Virgin”
Cipro Other people’s advice that don’t know anything about Lyme.
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