Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Mysterious Illness

typewriterScientific Mind, Sensitive Body

The impulse came from deep within me. My stomach abruptly turned as I rushed for the nearby master bathroom and, as if a well had gushed up from deep inside me, I strove direct projectile vomit into the toilet. The splitting headache that had engulfed my day now had a new symptom to contend with.

I hadn’t vomited in decades! Yet here, after only several weeks of living in a rented older home in the Kensington Area of San Diego, I began an illness which I am just now getting over after a six-year dedicated fight.

Shortly after this incident, I began a dizzying array of physician exams. First a local general practitioner heard my worsening problems with insomnia and anxiety, compounded with a surprisingly early menopause at the age of 49, and prescribed Ativan (lorazepam) tranquilizers, Ambien (zolpidem) sleep aid and anti-depressants. None of these medications was terribly effective.

Six months later, I was getting progressively worse, but now my entire family was beginning to get ill.  My two daughters were now repeatedly vomiting and all family members were experiencing unexplained bruising in widespread parts of the body. These bruises were sometimes massive, stretching the entire length of an adult forearm. Sore joints and eyes were common complaints in the family.

After many “Aha” moments, we eventually figured out that our San Diego home had been infested with toxic mold. Mold spores were detected throughout the house and mycotoxins (aerosol metabolites of toxic molds) were detected in the urine of all members of the family.  But not before this disorder had dealt me some crippling pain in my neck, radiating down my right arm.  We quickly retreated to new surroundings.

By now, I had been diagnosed as having multiple sclerosis (MS) based on the presence of two small brightly imaging lesions in the cervical spinal cord on MRI.  Daily injections of Copaxone (glatiramer) was the prescribed treatment to prevent MS recurrences.

Several new neurologists entered the fray and alternative pain medication prescriptions for Neurontin (gabapentin) and Lyrica (pregabalin) were tried over the next few years, but I found that they did little to change the progression of pain from my shoulder to my back and down my legs but nothing worked to relieve the pain. The only medication that had any beneficial effects was lorazepam, whose calming affect provided some measure of relief.

I attended many workshops where MS patients heard presentations by local neurologists, supported by Teva Pharmaceuticals, the manufacturer of Copaxone.  I never felt that my symptoms were similar to those patients in attendance. For more than two years, I dutifully took my medications.

I was referred to Kaye Kilburn, MD, President of NeuroTest in Pasadena, California. Dr. Kilburn was Professor at the University of Southern California School of Medicine and a specialist in environmental medicine. After two days of extensive testing, Dr. Kilburn’s diagnoses were chemical encephalopathy due to mold/mycotoxicosis, peripheral neuropathy due to mold/mycotoxicosis, intolerance (hyper-sensitivity) to mold/mycotoxins, and toxic optic neuropathy (visual field constriction) due to mold/mycotoxicosis. Pursuant to Dr. Kilburn’s directive, I ceased daily injections of Copaxone.

Three years of intensive bed rest honed my computer skills and I began intensively searching for answers to my continued pain. Hoping for a fresh start, I was soon greeted with what I thought was an upper respiratory infection.  An incredibly sore throat was soon complicated by globus, a feeling that there was an obstruction to swallowing in my throat.  Emergency room staff and otolaryngologist referrals resulted in symptomatic treatments with no resolution.  Soon crippling migraine headaches with projectile vomiting overshadowed the globus. These headaches would last for 3-5 days and they were recurring every other week for two to three months.

In addition to the extreme fatigue, I was also feeling faint.  We began to take my blood pressure at times of pronounced vertigo and typically found it to be substantially low, often having diastolic pressures between 45-55 mmHg.

Still bedridden, I began to better understand myofascial release. I approached a few people specializing in Myofascial release.  But they were unable to help me. I began practicing intensive self-massage for my simplest pain points on my scalp near my hairline with some early signs of success, noting that pain was often worse for a day or two and other signs of toxicity such as sores in the mouth may crop up, but typically the pain in that treated area would eventually disappear.  Expanding that same technique to my larger, more prominent pain sources was equally effective.

I was close to rock bottom! I had been told all my symptoms were associated with multiple sclerosis. I was deteriorating quickly. For the past three years, I had nearly lost the use of my right hand and arm. One of my scariest points was a morning I could not reach a bottle of shampoo in the shower. I became so weak I was unable to bathe or walk on my own. I literally thought I was dying and no one knew why!

I would like to briefly comment on the benefits of cannabis in my quest for health. Cannabis not only aids with pain reduction it also aids in calming your nervous system and helping with massage by providing a tool to localize the source of pain. In addition, the appetite stimulation that cannabis provides aids is maintaining nutrition.

Over the next few months, I slowly weaned myself off lorazepam and zolpidem shortly thereafter while ramping up my self-massage attacks on my most accessible pain points. I had been extremely weak and fatigued, often unable to walk and needed constant care from my husband. My daughter knew I just needed a more positive, cleaner environment. We sold our home and moved to the Pacific Northwest.    With the caravan in tow and my daughter driving my car the trip only made my illness worse.  Two weeks after arriving in the Pacific Northwest in declining health, I noticed a small improvement three days after a visit to the chiropractor where neck and back adjustments had some benefit.  Unfortunately, that hope evaporated as no further progress was made.

We seemed fortunate to buy a beautiful split-level home in our own private forest in Western Washington, only to find within a month that there were serious plumbing and gutter drainage problems that resulted in significant water damage. Remediation was bungled and for a period of approximately five months we were exposed to existing but previously undiscovered toxic mold that had my husband taking me from doctor to doctor, seeking a solution to what seemed to be a worsening pain situation.

After resolving the mold presence in our new home, my healing resumed.  My sleep returned to normal. I aggressively attacked my remaining pain centers with intensive massage. I found that after gaining some experience with cannabis, I could localize the pain in most areas of the body to find a lump, spot or band that was the excruciating source of the pain. Then, by putting pressure on that exact location eventually I could relieve my pain. Often, that area may continue to hurt for a few days, but inevitably, it would feel much better, returning to normal.  Moving on to the next pain point, I would repeat the process and now, about five months after beginning this process, I have eliminated more than 90% of my pain points.

Continued Internet research helped me find some Youtube videos by Dr. Joseph Serna, a general practitioner in Santa Ana, California, describing what he characterized as a cluster affliction of multiple patients with what he felt was a highly contagious viral infection with Epstein-Barr virus (known etiologic agent for infectious mononucleosis), causing a constellation of symptoms of ME/ Chronic Fatigue Syndrome, fibromyalgia and restless leg syndrome. Dr. Serna observes that he has seen increased frequency of these patients every three months. Since Dr. Serna’s video described the exact time and place that I had recently lived and the symptoms he describes were identical to those that I had experienced, more research was in order. I found that Dr. Serna had made these same Youtube video observations three years earlier, and he was not alone.

Since I had no recollection of having infectious mononucleosis as a teenager, Epstein-Barr viral (EBV) infection seemed a potential etiologic agent for my condition. To evaluate that possibility, I endured the needle to have a blood sample tested for EBV antibodies and found that, as expected, I had no EBV viral capsid antigen (VCA) antibody of the immunoglobulin M (IgM) class, proving that I had been previously exposed to EBV.  My EBV VCA immunoglobulin G (IgG) antibody level, however was four times the cutoff for positivity and my EBV nuclear antigen antibody level was unable to be quantified because it was greater than the analytical limit of the assay (more than five times positivity). Although crude, these EBV antibody results strongly suggest that at least my most recent two-year bout with the pain, fatigue and brain-fog may well be due to a recurrence in EBV because of the significantly elevated IgG antibody levels.

Since it is now well established that EBV remains present in the blood-forming tissues of the body after recovery from the initial infection and fibroblasts have been reported to become an EBV growth target during a viral reawakening, could the pain of fibromyalgia be due to “scarring” of the connective tissue in the fasciae surrounding muscles left in the wake of an EBV recurrence?

At the most intensive point of my therapy I was laying in the bed or on the floor massaging sometimes 10 hours a day. Today, however, I am still getting on the floor 3 times a week laying on my tennis ball. I am also massaging my right hand and arm at every opportunity. The pain in now much relieved, down from a previous 10 to a 2 and the number of pain points has drastically reduced to a handful, but I believe that, over time, I will soon heal myself entirely.

The human body in an incredible healing machine. This aggressive self-massage technique that I have used to localize and find eventual relief from the constant pain of this disease has freed me from the chains that have held me down for nearly six years. I hope that my experience may provide some hope to those suffering from similar maladies.

I’m free!
United States

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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