Took years till I received a diagnosis of Lyme Disease--from 2005 to 2013. ​Here's my timeline of illnesses, symptoms, & the various [unnamed] medical practitioners who helped.

Circa 2005
  • A bulls-eye rash beneath one of my breasts was diagnosed as ringworm; over-the-counter anti-fungal cream applied. (Later, in 2013, two doctors and I guessed that it was actually a tick-bite rash.) It was a reddish rash, with a definite ring around a small circle. No itching, no bleeding, no soreness, no heat. Faded in about three weeks, which is the approximate time either a bulls-eye rash or a treated ringworm mark would have disappeared. 
 
 Late summer/early fall, 2005
  • Redness and heat at the C-section scar
 
August 2007
  • Swallowing trouble first discussed with doctor; tomatoes were the suspected culprit. Did find tomatoes too acidic to eat, and seemed to close my throat then and for years afterwards. Finally was able to start eating tomatoes again on November first, 2013, and only occasionally at first; now eat them like a regular Italian!
 
September 2011
  • Bronchitis – on antibiotics & inhaler
 
October 2011
  • Bronchitis cleared two weeks in.
  • Poison ivy that spread rapidly to head and near mouth/nose/ears–went on antibiotics & steroids
 
November 2011
  • Day after Thanksgiving – found tons of blood in urine
    • Blood and clots surfaced for about 24 hours
    • Put on antibiotics immediately since it is a suspected urinary tract infection (UTI)
    • Monday: no infection, but told to continue antibiotics
 
December 2011
  • Met with a urologist
  • CT Scan found spots on left kidney; needed a follow-up CT Scan Dec. 2012, which I never received since my second urologist didn't think it was necessary. 
  • Placed on antibiotics again, since pain is bad and there is trace blood in urine
 
January 2012  
February 2012
  • At my follow-up appointment, my urologist also recommended the same OB/GYN my PA did
  • Continued yoga
  • Continued acupuncture
  • Appointment with my OB/GYN on Feb. 29 – she stated I have Interstitial Cystitis (IC) as she entered the room reading my chart.
 
March 2012
  • Physical therapy (PT) began, three times per month
  • Yoga, continued
  • Acupuncture, continued
  • Began counseling twice per month
  • Began chiropractic care plus take up acupuncture with insurance-approved chiropractor/acupuncturist once a week
 
April 2012
  • Yoga, continued
  • PT dropped to once per month
  • Met with a woman urologist who specializes—among other things—in Interstitial Cystitis (IC) for first time. My meeting with her also included my OB/GYN and my physical therapist.
  • Continued chiropractic care and acupuncture once per week
  • Continued seeing my local acupuncturist, as needed, which was often once per week
  • Started the E-ring on April 20th
  • Continued counseling twice per month
  • Began meeting with a nutrition counselor. I taught her about the IC "no-food diet" and she taught me about foods that contain acids and about hidden additives in our country's food system. I made an extra effort to only non-GMO and organic, and to buy local as much as possible
  • Began seeing a massage therapist at my own expense
  • Met with my primary care doctor for exhaustion, aches and pains, dropping things – he suggested I may have fibromyalgia & recommended I meet with a rheumatologist.
  • Called and made the appointment with rheumatologist; earliest she can see me is in September.
 
May 2012
  • Met with my Physician Assistant (PA). She agreed to meet with me every other week since I was having trouble managing all the doctors and juggling all symptoms and meds on my own.
  • PA recommended I call to see another physician familiar with fibromyalgia patients since my rheumatology appointment is so far away
  • Began aqua therapy for fibromyalgia once per week
  • Chiropractic care & acupuncture continued once per week
  • Saw a local acupuncturist as needed, which was often once per week
  • PT ramped up to once per week
  • Counseling continued every other week
  • Massage therapy became once per month, at my own expense
 
June 2012
  • Yoga, continued
  • Local acupuncture ended beginning of month since she moved out of New England
  • Missed some PT and aqua therapy due to nasty poison ivy, which landed me on antibiotics and steroids again
  • PT switched to twice per month & stopped at end of June.
  • Aqua therapy was twice a month until it stopped at end of June. I wished I could have continued; nothing helps my fibromyalgia pain like the warm therapy pool, but insurance protocol won’t allow for additional appointments.
  • Massage therapy was once per month, at my own expense
  • Met for three hours with a new doctor, regarding my fibromyalgia and all my odd symptoms.
  • Counseling twice
  • Chiropractic care and acupuncture continue twice per month
  • Met with my physician assistant twice
 
July 2012
  • Yoga, Continued
  • Massage Therapy moved up to once per week since I was in so much pain; it was still at my own expense.
  • My urologist suggested I see a neurologist for neck & foot pain
  • Called neurologist’s office, but Concord had no openings; made an appointment at Dartmouth Medical in November.
  • Counseling, twice
  • Chiropractic care and acupuncture twice
  • Met with my physician assistant twice per
 
August 2012
  • Yoga – first two weeks (vacation middle of August)
  • Massage therapy – first two weeks, at my expense
  • My stand-in fibromyalgia doctor tested and found I had low cortisol levels; she thought I was suffering from burn-out, and recommended additional meditation (was doing some in yoga) & reading a specific book (can't recall the title, nor the subject matter).
  • Met with my physician assistant once
 
September 2012
  • Massage therapy once per week (began mid-way through the month); we were able to work out a trade: I became a writing mentor to the therapist’s junior high daughter, after she and I meet and decided we were a good fit.
  • Met with urologist & OB/GYN together
  • Counseling, twice
  • Physical therapist started up again: twice per month
  • Yoga – not enough; practiced minimally at home
  • Began running in place every other day
 
October 2012
  • Counseling, once
  • Met with physician assistant twice
  • Massage therapy twice, trading mentoring for therapeutic massages
  • Some yoga, not very much
  • Met with rheumatologist who didn’t add anything to my care, except to confirm fibromyalgia symptoms seemed real
  • Flew to California for my brother’s wedding. Stuck to my IC diet except for one glass of champagne during toast. Slept and walked a lot.
 
Nov. 2012
  • Met with Physician Assistant once per month
  • Massage Therapy three times, trading mentoring for therapeutic massages
  • Was able to meet with Concord Neurology for a consult and EMG; tests were not very conclusive—everything in my hands were working, no help for numbness or pain
  • Met with a Podiatrist who thought I may have had plantar fasciitis; he taped my feet as an experiment for a couple weeks. Only thing contrary to his diagnosis was that my feet hurt at end of day, not at beginning: no pain getting out of bed in a.m.
  • Some yoga, not much; was too exhausted
Dec. 2012
  • Was too exhausted to attend most holiday parties
  • Health insurance denied MRI ordered by neurologist to get to root of neck pain
  • Started back with PT for neck pain
  • Podiatrist recommended cushion inserts for shoes
  • Massage therapy twice, trading mentoring for therapeutic massages
 
Jan. 2013
  • Physical therapy once per week
  • Physician assistant once per month
  • Canceled follow-up with podiatrist since the cushioned pads helped, but the tape experiment was a bust
  • Only managed to get in to one massage therapy appointment in, but continued to mentor
 
Feb. 2013
  • Last PT during first week of month
  • Met with physician assistant once
  • Massage Therapy three times, trading mentoring for therapeutic massages
  • Managed more regular attendance at Yoga classes in second half of month, including first power yoga
  • Took online Sleep Hacking class to help gather ideas for insomnia problems
 
March 2013
  • Purchased a month-long pass to yoga; went on average five times per week
  • Twice to massage therapy, trading mentoring for therapeutic massages
  • Blood tests for upcoming annual appointment
 
April 2013
  • Urologist and OB/Gyn dual appointment – follow up for IC
  • Physician assistant—annual physical
  • Massage therapy three times, trading mentoring for therapeutic massages
  • Yoga regular schedule (3 – 4  per week)
  • At Yoga Studio: saw a Chiropractic Healer – felt amazing for 24 hours afterward
  • Returned from a weekend trip to Vermont sore, sick, and exhausted
 
May 2013
  • Began EFT training (Emotional Freedom Technique) – seemed to help with pain in group setting, but otherwise, it didn’t connect with me.
  • Mammogram was normal
  • Participated in Pelvic Medicine Focus Group
  • One massage therapy
  • Some yoga
 
June 2013
  • Saw chiropractic healer again at Yoga Studio
  • Four massage therapy sessions, trading mentoring for therapeutic massages
  • DDS – found three cavities – they said it may be due to my dry mouth: a new symptom to add to the rest of my massive list of symptoms
  • To the E.R. – massive infection in left shin – two weeks of strong antibiotics; I refused to stay overnight
 
July 2013
  • Chiropractic healer at Yoga Studio
  • Some yoga
  • Massive exhaustion – after antibiotics were over
  • Met with doctor on duty – strep test negative, yet felt like strep
  • Two more weeks on antibiotics – actually took all pains away, felt better
  • Cavities filled – one hurt like crazy even with tons of novocain
  • Began Qigong and LOVED it!!!
 
August 2013
  • Met with physician assistant to discuss Lyme Testing as a result of four weeks on heavy antibiotics in which I actually felt normal again
  • Vacation – extremely painful. Woke myself up, the pain was so bad each night. Just touching the mattress hurt. And walking up and down stairs nearly impossible; fortunately the cabin we rented had handrails on both sides of the stairs.
 
September 2013
  • Met with Naturalist Wellness Expert for my first and second appointments. She determined I had Lyme in my spine and brain. Put me on a number of whole food supplements. And she determined my body was having trouble with other foods besides gluten. I went off sugars (except scant honey or maple, and fruits [though not peaches]), milk/dairy, and chocolate.
  • Blood test taken – Lyme: on Wednesday, the fourth
  • Qigong – last class
  • Went away with spouse to conference for weekend; first time truly incontinent; OB/GYN and urologist thought it may have been due to drinking a bit more wine than normal.
  • Massage Therapy, twice, trading mentoring for therapeutic massages
  • Last night did the cleansing yoga class, which was painful and difficult for me to get comfortable
 
October 2013
  • Naturalist Wellness Expert’s help had me starting to feel better; met with her on Oct. 16 to do any necessary adjustments since antibiotics for Lyme were added in my regimen, prescribed by physician assistant
  • Oct 4 blood test back: Lyme was on the line (not really positive/not completely negative), but determined positive based on other symptoms. Physician assistant scanned back through my medical records and suspected I had Lyme for years, maybe as early as 2005/2006….
  • Oct. 15 - started on Antibiotics
  • Naturalist Wellness Expert’s help had me starting to feel better; met with her on Oct. 16 to do any necessary adjustments now that antibiotics for Lyme are included in my regimen, prescribed by physician assistant
  • Busy month with: Managing a wedding for a friend, last film festival serving as a director, co-producing a short film with a friend’s teen in Vermont over a weekend, and flying to California to be with my family. Yet, besides some fatigue, managed quite well. The antibiotics and whole food supplements seemed to work well together!
  • Massage twice, trading mentoring for therapeutic massage
 
November 2013
  • Fatigued after return from California, but not wiped out
  • Met with Naturalist Wellness Expert and was feeling well
  • Successful weekend away in Montreal with spouse for belated anniversary get-a-way, but returned fatigued: took three days to recover (third day I could work again)
  • Walked/trotted a 5K Turkey Trot on Thanksgiving at Lake Sunapee
  • Felt good, though fatigued & fogged/confused, Thanksgiving and next couple days, slept 12 hours Thanksgiving night, 10 hours next, 12 hours next
  • No massages
 
December 2013
  • Dec. 1 – jogged/trotted about 3/4 of a mile, slept 10 hours
  • Dec. 2 & 3 – exhausted, depleted, knees hurt too bad to go down stairs, fog & confusion continued to worsen, slept 12 hours Dec. 12; also: the nerve pain in my feet started up again; kept me up much of Dec. 3rd.
  • Called Naturalist Wellness Expert’s office; headed in on Dec. 4 to pick-up some whole-foods supplements that I ran out of, and some new ones.
  • Called physician assistant’s office; told by Nurse to contact Lyme Literate Doctor’s (LLMD) office instead. I did via Hospital’s Patient Connect. Waited to hear if my meds should be changed. Felt like I’d hit a wall or a plateau with my antibiotics.
  • LLMD’s office called, suggested a third antibiotic, but I would have needed to get an eye examination first in case it damages my eyes
  • Naturalist Wellness Expert’s appointment Monday, Dec. 9. – Lyme was only in my left kidney (I wondered if that was the cyst that was spotted on the CT scan back in December of 2011); she added two whole food supplements to my list to aid in the regeneration of the myelin sheathing (which helps with foot and hand pain especially) and neurotrophin PMG (which aids in nerve tissue repair and rebuilding)
  • Researched, and spoke with pharmacist—decided against new third antibiotic that might cause damage to my eyes
  • Bought month pass at two yoga studios, took gentle yoga and detox yoga classes
  • Monday, Dec. 23, after gentle yoga, climbed into my car and experienced a quick shock of severe pain in my left kidney area. It passed and I instantly needed the bathroom. Wondered at the time if the Lyme had just left the kidney.
  • Knee pain daily throughout month; some days so bad I could not do stairs, not even to sit and go down.
  • Migraines about once every three or four days; improved as the month wore on.
 
January 2014
  • Naturalist Wellness Expert appointment, January 3 – Lyme Disease is gone
  • Off two supplements: Bacteria Chord and Core Cat’s Claw
  • Off Cefdinir antibiotic
  • Increased multi-vitamin (two per day) and Amino Gest for the Myelin Sheathing repair (four per day, up from three per day prior)
  • Was down to only half a cymbalta per day, and hoped to be rid of them by month’s end – realized as I backed off them that my increase in dental cavities and dry mouth seemed like it may have been due to cymbalta; because of that it was determined that I may need braces for my fragile teeth (though being so reduced of the cymbalta strengthened my teeth again)
  • Off Azithromycin, Jan. 23
  • Jan. 8 - realized I’d only had the beginnings of one migraine (yesterday) and my knee pain had subsided considerably!
  • Working from home more; since Saturday, Jan. 4, I actually had hours of clear thinking. Wondered if I would be able to teach additional classes, mentor more students (I had an AmeriCorps interview that afternoon for such a position), and start writing again.

My medical diary ends in January 2014. After that date, I was able to work again, teaching for the better half of a year as an AmeriCorps volunteer and a few more semesters as an adjunct professor at the University of New Hampshire.

Since then, I have contracted Lyme Disease again four times, Babesia twice, Bartonella once, and the Powassan Virus once. I am currently trying to void my latest bout of Lyme, with help from my Naturalist Wellness Expert.

I am tired of living life not knowing if I will be too fatigued to write or to participate in life each day as I juggle good days with not-so-good days. But at least I am managing my symptoms enough to talk about my novel, which was released in December 2018, and to research and begin writing the second Lyme crime novel.

​My brain fog and many areas of pain have been the difficulties this time around. As has my ability to stay away from foods I should not consume. But I am only human. Thanks for reading! 

Posted by Dana, Nov. 2, 2018; updated Dec. 26, 2018