Anne was diagnosed with fibromyalgia in 1986 after years of unexplained pain. For her, it was the midpoint in a life journey with unspecified physical ill-being on one side of the demarcation line and learning to cope with what she thought was fibromyalgia on the other side. ( She now realizes Lyme was the real issue behind the “fibromyalgia”.)
She was an active woman who raised and home schooled her children and was active in her church and in her community.
A Christian woman, she is now a self-taught naturopath and a member of prayer circles for the seriously ill.
For Anne, the road to discovering Lyme began with her ear. Her left ear, to be precise. One day three years ago*, that ear lost hearing.
Rather obviously such unexpected and extreme hearing loss was cause for concern and so Anne sought out her doctor for his advice and aid. The MD’s opinion, and possibly even Anne’s at the time, was that the primary cause may have been a sinus infection that she was slowly recovering from, but to be on the safe side the doctor sent her to an ENT, who suggested that they check for tumors and ordered an MRI.
That scan came back as highly abnormal, but not due to any obvious tumor. She had no symptoms for the things the radiologist suggested were the causes.
Next came a neurologist who informed Anne that her spinal fluid pressure was low and who ordered a (not surprisingly) unsuccessful spinal tap.
At this point, Anne was suffering from tinnitus as well as hearing loss and she was diagnosed with Meniere’s Disease and put on a prescription for Prednisone.
The use of cortisone and steroids is a huge “no-no” for people with Lyme disease but at the time, Lyme was not even on the radar, so Anne took her medicine.
When she did have a reaction to it, the doctor suggested that it was a cortisone allergy and moved right along.
Next, Anne developed difficulty in moving her left leg. She described it to me as a hesitancy rather than a full paralysis but noted that it definitely took a conscious effort to make that leg function properly.
Then her left arm began to “spasm out”.
These symptoms would worsen over the next two years. During that time, her doctors sent her to a teaching hospital for more MRIs and opinions from expert neurologists. No further diagnosis.
Then last spring she developed vertigo which seemed to support the Meniere’s hypothesis.
Anne began to develop balance issues and the paralysis worsened to the point where it is difficult for her to do anything with her left hand, and partial paralysis has moved into her right leg. She progressed from a cane to a walker as her entire left side became partially paralyzed and more rigid.
Finally, this past year, her neurologist would come to postulate “atypical” primary lateral sclerosis (PLS…similar to ALS – Lou Gehrig’s disease, but a little slower to progress) as the possible cause. He sent her to yet another neurologist, who trained at the Mayo Clinic. She diagnosed Anne with Corticobasal degeneration.
Many years ago Anne had gone to an alternative MD to obtain bioidentical hormones after a hysterectomy. She wondered if she went back to him if he could help explain her symptoms. As it would happen this doctor was a Lyme Literate Medical Doctor, an LLMD, and it was this person that first screened Anne for Lyme.
In June of last year, Her screening, through IgeneX came back as negative for Lyme and coinfections, but a CD57 check came back as low. CD57 is considered a fairly reliable Lyme indicator test.
Her doctor diagnosed her with chronic disseminated Lyme disease based upon her CD57 and a clinical diagnosis based off of her symptomology and medical history. This diagnosis was confirmed by a separate naturopath with separate testing.
So Anne finally had a diagnosis.
She says her first step then was to watch the acclaimed Lyme documentary, Under Our Skin. She says she found that experience to be “scary” and so found herself at the age of 62 trying to decide whether or not to go through the rigorous Lyme treatments or leave things untreated.
She and her husband decided to pray upon the decision.
She then received a message from a lady in her prayer circle who suggested that she look into Rife machines.
Anne did so and after listening to how they worked, seemed unsure.
But at this point, her husband intervened and pointed out that they had been praying for an answer and that this answer had come to them so perhaps they should give it a try.
They did so.
Anne chose the large and powerful “beam ray” version of the machine and did six weeks of twice daily ninety-minute sessions. She also began to follow an herbal protocol for Lyme disease treatment introducing one herb at a time into her daily routine.
She says that after doing this for awhile her health screenings showed lower levels of Lyme and infection throughout her system.
Additionally, she had the mercury fillings removed from her teeth, detoxed for mercury, and began to treat for the various Lyme co-infections as they showed up on screenings. She was positive for Rocky Mountain Spotted Fever, Ehrlichia and interestingly for malaria, continuing with various herbals and twice daily treatments with the Beam Ray.
She also eliminated sugar and gluten from her diet and is a Paleo diet fan.
After 9 months, all her screenings remain in the 0-1 categories. ( remission)
She has also added something called an iMRS mat to her protocol which is apparently a form of bioelectric pulse therapy, specifically Magnetic Resonance Stimulation based on the earth’s frequencies and the Chinese Organ Clock.
It is a wellness device, giving the body good frequencies that we cannot live without, over the past 5 years people are seeing phenomenal results with Lyme patients who use it consistently in combination with other therapies.
So in conclusion, Anne took charge, and at the time of this interview, while she is still homebound due to the paralysis issues, the Lyme has been in remission for 4 months and her sleep, anxiety, extreme fatigue and other issues have been reduced.
Unfortunately, the Lyme may have caused permanent paralysis.
Her message to the world? She is hopeful that everyone reading this get tested immediately for Lyme if they are ever bitten by a tick! Treating immediately with 4-6 weeks of doxycycline will rid your body of the infection before it reaches cataclysmic proportions.
As of this writing in 2016, Anne is no longer with us. Anne died sometime last year. I am not aware of the official cause of death, as it was never announced in the forum where she and I met. Her husband says she died of “complications of untreated Lyme disease.”
Sadly her remission did not last.
*closer to six now.