My Story of Lyme

I was diagnosed with Late Stage Neurological Lyme Disease in July of 2010 and have been in the process of treatment and understanding what exactly this all means ever since. I’m sharing this because it was running into other people’s stories that led me to finally understand what was going on with me, and I would do anything to save someone going through as many years of hell as I did. So please, if you read this and it in the slightest sounds like you or someone you know..take action & be well!
I don’t know when I got Lyme (I never had any kind of rash) I now know that I have had Lyme specific symptoms since I was a kid and have thought for a while that it is likely I was born with it. I am excited to say though that recent events have brought to light that many Lyme patients that have been ridiculously sick have a genetic inability to fight off biotoxins such as mold and also Lyme toxins. This means that the immune system is fighting overtime to clear out what it can’t defend against and that the body is in a constant state of inflammation. This may provide an incredible explanation for a lifetime of illness and also a reason why some people have such am intense reaction to having and treating Lyme Disease. I’ll be testing for this genetic issue (which is treatable!!) as soon as I can and will keep everybody updated.
This is my story. It’s taken me forever to compile as I’ve never written it all down or really looked back at all of it until it I was diagnosed. I'm sure I've forgotten all sorts of things, but perhaps I'll add them in as I recall them. I’ve been sick as long as I can remember, so for me it was a part of my life, not something that happened suddenly or any singular event that I could pinpoint clearly. Symptoms were so numerous and ever changing I lost track of them all… it all blended together and much of it I forgot as soon as it was over. I was living in the moment, doing my best… I had good years and bad and during the worst did everything I could to try & find out what in the hell was wrong with me. I have been asked many times how it ever could have gone on for so long without any sort of diagnosis... part of the answer to that question lies in the fact that the Infectious Disease Society of America denies to this day the existence of Chronic Lyme , and therefore Dr's around the country are not educated about it at all.This atrocity in our healthcare history is wrapped up in politics, lies and money. If you would like more information on how this came to be please watch the Oscar nominated documentary ‘Under our Skin’ now available on Netflix.
My Lyme Story ~

1971-1978~ Born cross eyed. Had 3 corrective eye surgeries before 6 months old. Constant colds
etc, reactions to vaccines. So many photos of me during those years show a pretty
sick kiddo. Was finally referred to an allergist by my Grandma (pretty unheard of
at the time.) Allergist hypothesized that I was allergic to bacteria (?) wish I knew
more about this, but I know his theories we unusual. Given allergy shots which helped
immensely, but according to my Mom, if I missed one I got sick immediately.

1978~ Only known tick bite while in Wisconsin, nymph embedded in my ear.

1979~ Moved across the country, stopped allergy shots. Was mostly okay & seemed to be getting stronger & better.

1980- 1981~ Spent time in Connecticut 2 summers in a row, very endemic region, always outside.

1981-1989~ ‘Sick’ often with very long recovery times. Constant viruses, sinus infections,
ear infections, vision issues, fatigue, heat stroke, intermittent insomnia, fevers
etc. Was given Amoxicillin every single time I saw an MD. Lots of Amoxicillin through
those years! Was so sick once in 1984 after a highly stressful event I couldn't
remember 4 entire days. Started seeing a Chiropractor for spine & neck pain 2x a week
in 1986. 1988 had a kidney infection that nearly killed me. In emergency room twice,
took weeks to recover. Remember now that I think back, during High School long bouts of feeling feverish and horribly foggy, periods of intense anxiety... not being able to deal with school at all many days.

1990~ Hospitalized for severe uterine infection & ovarian cysts. Antibiotics & birth
control pills to keep cysts in check. Got my first very own whopping medical bill at
18 yrs old… $5,000.00.

1990-1993~ Constant problems with ovarian cysts. Living with enormous amount of pain despite
what MD’s recommended. Saw many Dr’s and specialists. Finally gave up and saw an ND.
Went off birth control, stopped taking antibiotics, changed diet, started
supplements, saw the first real improvement general health. Got stronger. Got licensed as a Massage Therapist.

1994~ Better but still getting ‘viruses’ that took way too long to get over. Started
seeing an Acupuncturist regularly which really helped. At one point got really ill
with 104 temp I couldn't get rid of. MD said….VIRUS gave me amoxicillin which I
didn't take. Saw my Acupuncturist who muscle tested me which showed I had developed a
total intolerance to coffee (I worked for a coffee roasters). Took so long to recover
I lost my job.

1995~ After a period of big life stress began to have insomnia full time. This is also when I started getting terrible anxiety and really realizing that I had low grade fevers and the over-
toxic feeling.

1995- 1999~ Constant ear and sinus infections. Started having a lot of pain in my hands from doing massage, joked about arthritis. Saw another ND who did full blood work and came up empty handed. Thought I had a malabsorbtion issue and wanted me to look into food
allergies. Once had an ear infection eat a hole in my eardrum. Kept asking why so
many infections & long healing times, got nowhere.

1998- 2001~ Really suffering from constant insomnia + fatigue + infections. Had to quit my job.
Got progressively worse. Anxiety reaching all time highs and was so weak & ill I
could barely leave my house most of the time. Usually better at night but had
discovered that alcohol was the 1 thing that made me feel quasi-normal for short
periods of time & was pretty much necessary to handle social situations. Had a bar &
nightlife oriented life… started drinking a lot to handle it all. Put myself on heavy
supplement protocol to deal with this all. Having trouble with while working at massages & body work, getting overly fatigued, losing strength etc. Having to cancel many massage appointments from being too sick. Once got really sick with 4 days of 104 temp,
went to the ER where the Dr upon seeing my white blood cell count, asked my husband
to leave the room then asked me how likely it was that I was HIV+. (this was not the
only time that question came up). Given Amoxicillin & sent home.

2002- 2005~ Moved from Portland, Or to Arizona saw an immediate improvement from sunshine &
lack of cold damp weather. Better for about a yr, anxiety came back & insomnia.
Began seeing a Holistic MD who put me on L5 Tryptophan & St John’s Wort. Got
steadily worse..all the old things came back plus new things like developing
allergies (of the regular variety), nerve pain, psoriasis of the scalp and
migraines. Started drinking more & more to be able to sleep, and to handle all the
symptoms and the overwhelming chronic stress from all of it. Gave up my massage license as an hour appt was too much for me & pain in hands was much worse.

2005~ Split with my husband moved to Hawaii. Had an active busy lifestyle for 7 months,
lots of sweating & swimming, physical labor. Best I felt in years! Still had
insomnia & anxiety.

2006~ Moved back to AZ and in a suffered a huge health crash. All the pushing myself &
stress of the past year took its toll. It lasted 9 months. Had trouble sleeping at
all for days at a time. Had such intense anxiety I thought I was losing my mind. Went back to Holistic MD did full blood work & blood tested for food allergies. Tested positive for a bunch of things and did 3 month elimination diet to clear out from them, didn’t feel much better. Started Paxil. Dr suggested regular allergy testing. Tested highly allergic to nearly everything! Allergist wasted a lot of time insisting that I try different medications before finally 6 mo’s later agreeing to let me do immunotherapy (allergy shots which help build your own
resistance to allergens).

2007-2008~ 1 year of allergy shots plus low level steroids, actually began to get some relief.
Thought I was really on my way to seeing the end of this as the Dr’s were positive
at this point allergies were to blame my whole life. Took A LOT of benadryl.

2008- 2010~ Moved to Louisiana, pushed myself really hard for about 6 months before crashing
again. Kept up with allergy shots,though when they re-tested me I was very
surprised that very little showed up as aggressively as before, besides mold. Kept
having more symptoms show up, mild encephalitis, depression, mood swings, really
bad brain fog, massive dizziness, joint pain & nerve pain. Allergist insisted Mold
allergy was the primary reason for my increasing symptoms again. Quit Paxil.
Began doing heavy amounts of research on my own when I could think straight, which
was not very often. I had begun to notice that I was having learning difficulties
and cognitive issues like concentration problems and decreased attention span. But
because of so much brain fog found it very hard to put these symptoms into words,
and as before forgot about so many things the moment they passed.

2010~ Moved to NJ partially in an attempt to get away from the mold in Louisiana. Was pushing
myself really hard again and under a lot of stress. Began having much worse nerve
issues, pain, problems walking and eventually seizures. My research had so far
gotten me nowhere. I had looked in to Lyme several times after my sister
brought it up because I had had strange circular welts on my elbows that no Dr had
been able to explain. Until this point I had kept only running across the standard
definition of Lyme & it didn’t fit. When I started digging deeper after my other
sister ran into something about Lyme that sounded like me, I was astounded to say
the least at what I was finding and how many people’s stories we’re so very much
like my own. In NJ it is legal for Dr’s to treat Lyme as they see fit & I was
really lucky to be where there is help available when the pieces finally came
together.

I had a lot of help during the worst of these years and my greatest appreciation to my family & the friends who stuck it out with me. Much love.