If you think you may have Lyme disease, it is important to keep track of your symptoms.
Anxiety, brain fog and memory issues can prevent you from remembering all the details when you need to.
I tried to keep a timeline/journal all through this whole experience I have had the past few years, at first I wanted to document everything for the dr’s I saw but none of them wanted to read it so I continued it to get my own perspective and to keep from going crazy.
The timeline pasted below describes my symptoms as best I can remember, and if a Lyme literate MD tells you to take antibiotics DO IT because my timeline of symptoms is a lot less miserable to read this than to experience these symptoms and pains first hand!!!
My Lyme SYMPTOMS TIMELINE:
July 2014 – come down with odd “summer flu” that lasted 5—6 days; 102 fever, extreme crushing bone pain in legs, vomiting/diarrhea.
Mentioned the above illness to my NP at that time @ the holistic medial group I go to twice a year (I’d been going here for 15 years for bio-id thyroid and they fixed a hormonal imbalance I had had after I had an ovary removed due to cysts), who tested my C4A in September 2014 and it came back with pretty low reading like 2,000.
In 2014 I started getting tan odd petechia rash all over my neck, I still have it, (which my dermatologist said was sun damage but I just don’t think that’s all it is).
February 2015 – had to go to ER due to nurse at urgent care telling me I may have pneumonia, had to stay overnight for respiratory therapy, was sick with chest flu weakness and body temp dropped abnormally low, my body temperature stayed at ~96 degrees F for a month after. My lungs never stopped wheezing after this.
Rest of 2015 – Started having more and more fatigue.
all through 2016 – Fleeting recurrences of Trigeminal Neuralgia started to occur randomly on my left side of face, always at night or while I was sleeping (sudden ice-pick stabbing pains in my left ear, that woke me up).
Spring 2016 – went to Franklin canyon almost daily to hike a very overgrown trail, I got many many bug bites this month on my arms and legs, spiders and mosquitos but did not notice any ticks on me. Franklin Canyon is listed as having Lyme positive ticks on LA County vector map.
June 2016 – Awful migrating joint pain started in hands, wrists, elbows and feet. Fatigue started to worsen. One day i couldn’t walk on my feet. Went to podiatrist who said I needed to screen for RA.
August 2016 – saw DR E at my Holistic Dr office for bi-annual Thyroid/hormones maintenance visit – told her of sudden onset of crippling arthritis symptoms and she gave me lab slip to go get some tests.
October 2016 – Dr E lab slip tested me for every virus known to man but never had me take either of the two Lyme tests recommended by the CDC, who everyone knows has the totally wrong approach to treating Lyme, the Antibody or WB for Lyme. The tests are proven to be really inaccurate but I’d rather take every test than not take it, especially when she tested me for so many other viruses which came back positive but were all supposedly dormant or “past infections”. (I finally got these tests later in 2017)
Two other were tests off the charts from. My Eosinophilic Cationic Protein and C4A both were flagged with high results, and she tested me for viruses that said I had evidence of past infections. Dr E told me she thinks I have Lyme &/or Babesia and to take Doxycycline – I told her flat out I did not want to take it.
(Dr E didn’t mention if left untreated, it can go in my brain, I never heard of this before, I am a very healthy person and I didn’t believe I needed to take antibiotics.)
December 2016 – Dr E had also said I needed to be screened for RA. I got a referral to a highly regarded Rheumatologist by a friend who he had helped with her RA. I mentioned Dr E had dx me with Lyme and Rheumatologist laughed and shook his head and said “NO way you don’t have Lyme”. But lab tests confirmed I did not have RA.
Dec 2016 – Jan 2017 – Migrating joint pain became severe, always worsened at night, not being able to use hands and extreme pain affected my ability to prepare food and care for myself.
Early February 2017 – Trigeminal Neuralgia came on full time, non stop unbearable nerve pain and spasms all over left side of face, ear, scalp, could not function, extreme pain, could not cope. Got referral to neurologist #1, who told me I had Trigeminal Neuralgia and prescribed Tegretol and told me to come back in a month.
Mid February 2017 – I was becoming suicidal/couldn’t function from the non stop never pain. Found online that TN can be related to Lyme disease and without any other options except what seemed like suede, i started taking Doxycycline Dr E had prescribed in October 2016.
Mid February 2017 – went to see ENT because pain was so severe still in ear 3 weeks later. She ordered MRI w/wo contrast. Also used scope to look at my sinuses and esophagus and said I had “acute arytenoiditis” due to extreme swelling and redness in my throat. Prescribed two stomach meds (anti-acids I think) I did not take because I was on antibiotics by then.
Late February 2017 – went for MRi but never got results until May 31 because I was so sick from taking ABX/herxing.
March 2017 – saw Dr E, the LLMD again, told her I had completed one month of Doxy, she prescribed Three months of Doxy and pulsing Tindamax 2 weeks on/off while on Doxy.
April to June 2017: took doxy everyday and pulsed Tindamax every 2 weeks. Horrible fatigue. Lost ability to write by hand. Severe cognitive difficulties, memory issues, extreme fatigue. Extreme joint pain came and went, gradually became less severe over time and have now tapered off completely.
May 31 2017 – went back to ENT to get abnormal MRI results, was referred to Neurologist
June 2017 – got severe jaw pain on right side on last week of 3 months of ABX. Jaw went “off track” and could not align teeth on upper and lower and had extreme pain in jaw for a week.
June 2017 – saw Dr E again after completing 3 months of antibiotics. Next, she prescribed 4 months of both Doxy and Tindamax 2x a day, two weeks on, two weeks off for next 4 months. I had thought all I needed was a month of Doxy! Boy, was I wrong…
July 2017 – saw a new Neurologist, this time I had waited six weeks to see the head of the Neurology dept. at Cedars. He had me take a Lyme Antibody test, and dx me with Lyme based on my history and because Doxy has eliminated 99% of my pain, and he also referred me to Infectious diseases.
July 2017 – Nurse at Infectious disease office told me they don’t see Lyme patients but would not tell me where to go. Totally gave me the run around. Frustrating! I decided not to pursue it, I am still pulsing ABX and feel awful, do not have the energy to see one more dr.
July 2017 – My Lyme Antibody test came out “Equivocal” with .90 reading, (and the text on my test results says “Positive or equivocal screening test results should not be interpreted as truly positive until verified as such using a supplemental assay (e.g., B. burgdorferi blot”)). I will be taking this test next month as it’s on Dr E’ss lab slip for my tests before my next visit with her.
July 2017 – Extreme migrating Joint pain is gone. Brain fog, anxiety, depression, crippling fatigue comes and goes, and is still present. I have been resting and not over exerting myself and am genrally feeling like 1% better overall each day lately.
August 2017 – I started getting some strange pains again, but not as severe as earlier in the year. One weekend I got a very stiff neck, it was odd all of a sudden to have totally limited range of motion. After a few days it totally subsided. But the next week, my left forefinger started aching like crazy and swelling at night. This lasted a week. I have had some stabbing pains in my ear and shoulder pain in August. I know these are related to my Lyme as they all would be worser at night.