May is Lyme Disease Awareness Month. Why this is so important:

Yes, I know.... it's been a very very long time since I've updated my blog here on my journey with Chronic Lyme. The truth is I got too sick, too overwhelmed and too beat up by life. When I started this blog I had NO idea what was coming. No way of knowing that this was only the beginning. Sooooo much has happened since then. I will come back soon and fill in the blanks.
As my healing continues, my deepest wish is to be able to return to writing full force, to share my incredible journey through how much I have lost and how much I have learned along the way. I was inspired yesterday to write what I am about to share here as May 1st is World Lyme Day, kicking off the whole of May being Lyme Disease Awareness Month. Amazing timing this year as there has been so much mainstream coverage thanks to Avril Lavigne, Yolanda Foster and all the celebs participating in The Lyme Disease Challenge (yes Mr. Shatner, I mean you!)
Here is a slice of my story, my family's and my beautiful sister Karlee Watkins who is gone from us now because of this horrendous disease and it's myriad problems. Please share if you are so inclined. Awareness is everything.

It's May 1st, World Lyme Day (and May is Lyme Disease Awareness Month). This is a photo from yesterday of the many courageous warriors rallying in Arlington, VA. at the IDSA (Infectious Disease Society of America) headquarters. The IDSA is responsible for the guidelines that make up the definition of a disease ---> this is then what everything is based on ---> education for Dr's and the medical world, treatment, laws, insurance standards, research needs and more.The current guidelines for Late Stage Neurological (or Chronic Lyme) are WRONG and have been for a very long time. This is a long story that I have spoken about many times; tied up in politics, corruption & more. This has led to an entire country being denied care for a very debilitating syndrome that makes up Chronic Lyme Disease. As it stands now, Lyme treatment laws are state to state, with it being ILLEGAL for MD's to treat long term in many places. Because of this many Dr's who are Lyme educated are out there trying to help patients & getting attacked by insurance companies, prosecuted and loose their licenses. Patients have to travel far & wide to get help, all costs have to be paid BY THE PATIENT, and there are just not enough Lyme Literate Dr's to help everyone.
The Lyme community has been fighting very hard for years & years to get this changed, as this has created a situation unlike any every seen before & unlike any other disease. Oregon, where I live now... I have come to find out is what is called a 'Fail To Treat' state... meaning all MD.'s through the Oregon Health Plan and insurance guidelines will deny treatment for Chronic Lyme and co-infections. This leaves all patients to have to fend for themselves, many leave the state for treatment and everyone has to pay for everything themselves. Returning to wellness from years of Chronic Lyme is complicated, individually based and long term in most cases. Leaving many, like myself, floundering & debilitated without care at all.

As many of you know, my own journey here began 5 years ago when I was finally able to track down a diagnosis MYSELF, and then found a Dr. in N.J. where I was living to get corroboration and start treatment. Not one single Dr. I saw in hundreds over the course of 30 years ever suggested Lyme to me. This was not exactly their fault, as the guidelines are so incorrect, the entirety of the medical world is not educated to look for, diagnose or treat Chronic Lyme. If this was different I would have received the help I needed a long time ago and not be in the position I still am now... low functioning and unable to work or be a sovereign being like everyone else my age.
My sister Karlee, like so many Late Stage Lyme patients also suffered enormously from misdiagnosis. Because Dr.'s did not know what to look for, or what they were looking at, her worst symptoms got her shuffled off to the care of the mental health world, which failed her miserably as her condition was not psychiatric at root cause. In her early 20's she began presenting with symptoms matching Schizophrenia. I now know she had many symptoms of Chronic Lyme all along, just not registering or understood at the time, as Lyme is the Great Imitator, sharing symptoms with a zillion other conditions . Because nothing unusual showed up in her blood work (standard with Chronic Lyme) it was assumed to be psychiatric in nature. She was forced because of her insurance to see mental health professionals at her giant HMO in Hawaii, who had no idea what to do with her as she absolutely did not match the specific criteria for Schizophrenia. Eventually, many years later she was given a 'non-diagnosis' (the best anyone could come up with) by the one psychiatrist she saw that actually helped her: an Undiagnoseable Schizophrenia Type Disorder. That was the best it ever got. It took me 2 years after my own diagnosis to try to get her the help she needed (long story). We were in Louisiana at the time, where there is not a single Lyme Literate Dr. and our resources were drained from my own care... it was too little too late. She took her own life in September of 2013. This could have been prevented.

While myself and my family have every reason in the world to be angry & on the leading lines of activism... we have had to chose our own health, happiness, positivity and sanity over the big daily fight. For my own wellness I can no longer have Lyme be the at the forefront of my mind or on the tip of my tongue every single minute. I share when I'm up to it & am moved, but I am tired and just want to be whole, happy and focused on the positive and the future.
I support with all my heart & soul the courageous Lyme warriors out there making a difference and ask of all of you to do the same. CHANGE is desperately needed.
For more information & to help please visit
http://www.ilads.org/ the INTERNATIONAL LYME AND ASSOCIATED DISEASES SOCIETY or
www.themaydayproject.org... see below photo to call or fax the IDSA today.
Thanks so very much for listening. Health and happiness to all. 

Update & Protocol~ August 31st 2011

As I was rounding up a big ol' order of supplements and such today from my various online sources it occurred to me that it's a good time to write up my current treatment plan & share with everybody just what & how much I'm doing. I've always been a health forwards person. I gave up on Allopathic medicine began seeing Naturopathic Dr.'s and juicing & such way back in the early 90's when I started studying alternative medicine in earnest. I was a Massage Therapist & Energy Worker for most of my life and Healer is still my true calling. I lost my path of care for myself after my divorce in '05 and just never really got it back together until last year when it all blew up in my face.

I am currently not doing treatment for Lyme specifically; ie killing bacteria. I started with my 1st Lyme Dr. last year in August. We did several months of testing & immune boosting before starting a 4 month plan of killing Lyme. It was all guess work...At this point ALL TREATMENT FOR CHRONIC LYME DISEASE IS EXPERIMENTAL. I tested negative for Lyme & co-infections (very common) so the standard approach is to throw anti-bacterials, anti-microbials, anti-parasitics & biofilm busters atcha & see what happens. Yay for being a helpless guinea pig!! Well what happened was WAY worse than expected. After dealing with this my whole life I had no clue what were reasonable reactions. I had read over & over how astoundingly ill people get while experiencing the die off reactions & figured hey the sicker the better! So I somehow survived 4 stretched out months of not being able to eat, vommiting all day everyday, not being able to walk, feed myself or get off the floor, unspeakable pain, seizures, brain inflammation off the charts, spinal cord inflammation, wild mood swings & so much more. Desperation, despair, anxiety and PANIC in every moment that equaled over 4 months of being massively suicidal EVERY minute of EVERY day. I was scared to death & not at all sure I could survive this, especially in my current situation of being away from my family & having no support or help around and a TOTALLY unprepared boyfriend. My Dr just wasn't hearing me when I tried to explain how BAD it was and that I felt like I wasn't detoxing anywhere near enough. He told me to just take it slow & keep taking detox baths ( I was taking the lowest possible dose already & I don't have a bathtub, just a giant gardening tub I can haul in the shower & soak 1/2 of me at a time.) I didn't know what to think except to take his word. Even though I spent every capable moment researching, because that is truly what it takes to understand this disease, it's complexities and all the options available, I was way too sick to think my way out of anything. Right at the end of my last round my gallbladder FREAKED out. I went to see him, scared that I was having serious issues there & with my liver, he asked if I was doing the baths and then basicly said it was my fault for pushing too hard. Excuse me??? Lol. I like this Dr, I really did, but I don't think he'd ever seen a case like mine and was just waaaay too basic in handling it all. We started a long gentle homeopathic cleanse to give my body a break.
I was so glad for this as I started getting better! Even though we had never talked about it I started doing coffee enemas regularly to get the toxic buildup OUT of my system, the clearer I got the easier it was to tell when I was overloading, the homepathic cleanse was great but still NOT enough! I started adding in all kinds of GREAT supplements I learned about through friends that were never brought up by clinic I was at. And the better I got the more I could think & research & figure out what happened & what to do about it. Since then I have figured out that I am definitley in the group of folks who have a genetic innablilty to detox biotoxins from both Lyme and mold, amongst other issues that need to be addressed in an order that is beneficial as opposed to harmful. After a lifetime of Lyme bacteria & co-infections running rampant through my whole system and my poor poor body so inflammed and working SO hard to detox what it just couldn't... blindly starting treatment like that was equivalent to throwing gasoline on the fire. WHOOOOOOSH...watch me burn!!! Dangerous to say the least.

Sooooooo. I finished that cleanse and dropped my Dr. I've had continuing issues with my gallbladder for months since, painful no fun stuff but it's getting better! I turned my attention towards health, getting my body what it needs and detoxing in a huge way. I've radically changed my views on treating Lyme over the months... I now belong to the camp that believes severe Herxing does more damage than good. So many of us cannot handle the huge amount of neurotoxins being dumped in our systems by killing the Lyme bacteria, and these toxins do a tremendous amount of damage to the body. They ate up every bit off body fat I had, I think I lost about 10 lbs and looked horribly anorexic. When I was so sick I wasn't able to focus on diet & particularly the low carb anti-inflammatory diet that is so needed, I couldn't eat at all! Now I've changed up everything...bye bye gluten, see ya sugar!! I juice at least 5 days a week.... green juice baby!! And as I've gotten that down I'm adding in more juices through the day like carrot & beet etc. I've started wheatgrass shots, finally, everyday & and I alternate coffee & wheatgrass enemas 5 days a week at least. I keep an eye on my PH everyday to make sure I'm not too acidic, what a great tool by the way.
It's a step by step process let me tell ya. Just getting used to taking so many supplements in the beginning is a challenge & takes awhile to get under hand. Step by step. Smarter detoxing, smarter food, better exercise, knowing what's happening and why. I have to give SOOO much credit here to my wonderful Facebook Lyme family & community for all their never ending help & support. I never could have gotten this far without losing my mind or killing myself if it weren't for the endless sharing of research and information and LOVE that happens on FB.

Now I am looking into a new Dr, but glad I haven't moved on it yet (these specialists are expensive & I have zero insurance or help from the Government). I continue to get clearer & learn more everyday I want the RIGHT one and I want to be 100% sure of what I'm gonna go after. I'm waiting, & getting healthier by the moment and feel like a completely different person in perspective of this whole picture, after less than a year of beginning this path. I still deal with plenty, lol. My entire life consists of taking care of myself 24/7!!! It really is a full time job. I rarely leave home still, social stuffs are too hard most of the time. I can't drive mostly still as I still have neurological issues. I have severely limited mental energy, though that is getting better. I can't remember anything unless it's right in front of my face. Symptoms come and go, some mild some brutal & I have flares sometimes that knock me on my ass. Too much rain makes me miserable and I can't tolerate cold temperatures. It truly is an hour by hour existence... do I wanna go out & do sumin? I dunno, ask me 15 min beforehand!

I feel good though... I know I am getting healthier & better by the moment, I can feel it... and am very positive about all the changes & the direction I'm heading.

So without further ado (like that wasn't long enough! I am incapable of writing a short story, lol It's taken me ALL day to write this) here's what I take & do everyday!

(And I just want to say here, that if you are looking at ALL this thinking "OMFG...you have got to be kidding me", that's about what I felt like a year ago. I had to do this on my own, no friends to call & a very busy boyfriend. No Wholefoods or equivalent nearby to easily grab anything I needed. I have never considered my self to excel in self discipline. I don't do well with routine, I can hardly bear to do the same thing every single day. But little by little I've made it work for me. I don't believe in denying your self to the point of suffering. You can't possibly tell me that's good for you. So I've figured out how to have chocolate and other things that make me happy. You can too!)


Protocol

- Gabapentin (the only pharmaceutical I take & it saved my butt! Helps hugely w/anxiety, sleep, mood regulation & pain, particularly nerve pain)
- High Potency Multi
- High Potency Multi + protien powder in shake form
- Vit C 4,000- 10,000 mgs
- Vit B complex
- Vit D
- Vit B12 Methycobalamin
- High Quality Fish Oil 4,000mg
- Gaba 750mg 3x
- R-Lipoic Acid
- Milk Thistle
- Co Q10 300-400 mg
- SAMe- 400mg or more
- Adrenal Support Complex
- Ginko
- Lithium Orotate (for brain inflmm & neuro issues)
- Avavpaxin (for inflammation)
- Piracetam (neurological support)
- 5HTP
- Enzymes
- Prtobiotics
- Chlorella
- Pau D'Arco
- Dr Jernnigan's Neuro Anitiox II
- Free & Easy Wanderer Chinese Herbal Formula
- Trace Mineral Drops
- Molybdenum
- Activated charcoal as needed
- Supergoodstuff Nasal spray
- 1oz wheatgrass
- Flor Essence Detox Tea ( I've been off this for months but am really excited to start up again, my
landlord gave it too me when I got diagnosed, as he has several friends recover fully from stage 4
cancer using this!!)
- Bragg's Apple Cider Vinegar a couple splashes in water a day.


~ Everything I try to cram in on a daily basis~

Juicing, netti pot, detoxifying enema, yoga, Sunshine!! and fresh air, grounding or earthing~ either outside or with my Earthing kit, meditation,dry skin brushing, detox bath, raw foods, Dr J.'s foot soaks,
lemon water (try for a gallon a day), 1tsp baking soda in water to alkalize if needed, eye wash, green
smoothies, coconut oil, castor oil packs for pain & inflammation, oil pulling & probaly more I can't even think of right now lol! I'm still on hiatus from using my far infrared sauna until my detox pathways get clear enough to handle it.
The biggies: NO STRESS! REST. SLEEP. QUIET & PEACE TO HEAL NERVOUS SYSTEM. POSITIVE
ATTITUDE, as much as possible ;). Toss the fear!

Blessings to all~ much love, H.

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.

Heather Huston | See.Me

Heather Huston | See.Me


'The Power of Self is about your story, your image and the power you hold. This is your chance to share yourself and win one full year of your life paid for by Artists Wanted.'.....yeah!

Hey everybody! Please check out my portfolio for the Artists Wanted 'POWER of SELF' exhibition. This is really exciting stuff so if you could take a moment & rate my entry I would be much obliged!!! Thanks.

This is not me.

Oh my God it's one of those days. The kind where I wake up and my thoughts go searching for something happy, something to be excited, joyful about. Then it all comes crashing back in...LYME. I hate mornings most of the time now for this very reason. Who the hell wants to wake up like that, day after day after day? When the first thing you think everyday is 'oh fuck'.
And then start the long laundry lists of tumbling thoughts. Okay what happened yesterday? What changes did I make to treatment? What 10 new things do I have to remember today? Who did I talk to? What did I learn? Am I supposed to only eat spinach all day or apples or aloe juice? What am I out of? How fast and cheaply can I order it/them? Did I eat yesterday at all? How do I feel? Why does THAT hurt? Is my brain working? Did I do the best I could yesterday?(Try very hard to ignore guilt if this is not the case). Ignore the coffee...ignore the coffee...ignore the coffee. My god the coffee smells like 1000% comfort in a mug. The coffee smells so good I'm gonna cry. What did I want to do today? Do I think there is ANY chance of any of it actually happening? My brain hurts.

I don't match this disease. I have never thought of myself as a sick person and I never will. It goes against everything I believe in. My whole life I did the best I knew how to take care of myself, to seek help when I felt I needed it and most importantly TO NOT BE AFRAID. I was never insistent that something was wrong with me, THEY couldn't find anything (MD's ND's you name it) so I made a conscious decision everyday to rise above, to be stronger than whatever was wacking out in my body. I didn't keep lists unless it was severe, and then, just like the rest of us I would research till my brain was mush, till I had exhausted every last avenue and came up empty handed. I trained my self to ignore all but the worst of it, to not talk about it (all this does is confuse everyone around you and make them feel terrible) and to push on...shine on.

Now I am having a really hard time re-wiring my natural inclination to NOT FOCUS on any of it. Energy follows thought...thoughts become things. I don't want to spend all day every day tracking every damn symptom (there are SOOOOO many) tinkering with dosages, constantly watching, measuring. But this stupid thing makes you live like that. We are forced to be so responsible for our everyday care because so few of us get the opportunity to turn it over to a knowledgeable Dr, as there are very few. We live in a constant sate of questioning of researching of trying to stay on top of it. I am dependent now on the fabulous Lyme community on Facebook for information, all of us are. I check many times a day reading through long long posts gathering every jewel someone has discovered. We teach each other. I have 27 notebooks all over the house, I have at least 15 Post-It's on my computer everyday, I have a huge wall calender and still need a regular one too, my bookmark folders are all separated into categories and jammed with hundreds of sites and articles and reference materials and shopping lists. This is all up to us. Even with a good Doc. I like mine, I really do. He's a good person he's trying, he has compassion. But he's a PHD not an MD or ND and this causes me a lot of confusion. I can't afford to see 3 or 4 different people and am finding NJ lacking in a lot of alternative care. I have a nice primary, Chris's Dr. Very compassionate guy but he's not Lyme literate. He's aware of it and fascinated by my story, but he's had no more training than 98% of the medical community in this country. This leaves me questioning everyday if I have the best care, causing so much more of the huge anxiety we battle already. It requires so much of our mental energy to think this all through ... nearly every single day. Mental energy that anyone suffering from a Neurological disease just doesn't have. The more you learn the scarier it gets. ANYTHING can be happening in your body or many things all at once. There are no rules. Lyme causes massive inflammation that can lead to all sorts of issues. I've really come to understand lately that our issues are mainly caused by the fact that we are constantly trying to detox an enormous amount of neurotoxins that the Lyme bacteria dump into our systems. No one is built to handle this...I don't care how much of a super health person you are. How does anybody manage this? We need 30 hours in the day to take all our supplements and protocols and to RESEARCH and make perfectly nutritious organic food and do all our detox treatments and rest whether we want to or not. God forbid something big actually comes up, and now unless we want to throw ourselves at the mercy of the misinformed and non-lyme-educated hospitals, now we are even MORE responsible for making sure our bodies don't give up on us.
My house feels like a prison, my body feels like a prison, my mind feels like a prison. I just want to get away from it all. I want to be happy. I want to wake up and feel joy at the new day. I want to have much to look forward to. I want to be able to make plans. I want to give a shit that it's the weekend. I want to not feel crushingly overwhelmed for more than 1 day at a time. I'm not a sick person. I don't know if I can ever accept this.

I feel sad and overwhelmed and bitter and guilty and alone far too often. I feel way too responsible for everything . THIS IS NOT WHO I AM.

~SUPER BUDDHA RULES FOR PEOPLE WITH LYME~
Stay positive, do everything you can do, don't give up, be assertive, don't get excited, don't get upset about anything, don't get mad, don't be a victim, don't let anything get to you, don't complain, don't show fear, be hyper compassionate for those around you, be super understanding of how what you go through affects everyone else, be grateful every second, don't take anything for granted, take care of yourself, act like you're normal but get enough rest because if you push it too hard it's your fault, learn to say no (constantly), don't stress about anything!, let everything go, stay focused, stay relaxed, be happy, stay calm, don't worry, accept your limitations, don't accept your limitations, smile when you never get to leave the house as if it's your dream come true, don't let it get to you when everyone's lives are flying by and yours is barely crawling, when your friend's kids are getting big and you still haven't accepted that it's never gonna happen for you, don't feel guilty even when you're 100% dependent.. when there is no insurance/SS/Medicare/Medicaid/Financial Aid/Funding, ask for what you need, don't take anything personally, don't get irritated when people complain about the DUMBEST shit or say asinine things to you, don't get frustrated even when the most mundane tasks are a struggle for you, don't get upset when you're blamed for your foggy memory/moodiness/depression/frustration or jealousy of fabulously normal things like going to a movie or running errands or making your own money or traveling or hanging with friends. Be patient! STAY POSITIVE! be SUPER BUDDHA.

THIS is me. A montage of my photography work.

A Portrait of Lyme

 So here it is, the kind of project I've been wanting to sink my teeth into for a while now. The photographic chronicling of a personal journey  through the fire. Real images... sharing the plain truth of everyday strengths and the astonishing beauty of transcendence over suffering.


 I just never realized the first story would be my own.

 After a life long search, the last 6 months of 2010 led to my diagnosis of Late Stage Neurological Lyme Disease or Chronic Lyme. It's been an incredible life changing journey with a long ways to go yet; but that is a story you can find elsewhere in my blog.

 For now... this is a project begun. We all tell our stories in our own ways. My mediums are images and words. I hope that it will change and grow organically just as I do, so I can get out there and tell the stories of others.

  While this is a collection of self portraits, the last photo was taken by my friend Michael during a trip to Portland in 2008. I was having a really hard time, so this photo has become very much a Lyme Portrait to me, unbeknownst to us at the time. I really love it. Thank u M.dS55DnSJI/AAAAAAAAB0s/Q4b6qpgajE0/s320/MM-1.jpg" />

A New Year

 My my it's been a long while. If that doesn't speak to how crazy the past months have been, I don't know what would. Lol. What I have learned about the disease I have since I last wrote here is too much to tell. There are layers & layers & layers of understanding Chronic Lyme. It's been a journey to educate myself and yet NOT take it all on. That's just me. I have to know everything I can, leave no stone unturned, no mystery unanswered. And then process... take it in...filter...and let it go. Take everything good; every tiny gem and incorporate it into this not really 'new' but yet wholly different person that I have discovered in myself in the last 6 months. I've had to accept this path for the time being and that this thing has truly rendered me dependent on those that love me. That is not an easy thing to swallow, believe me. To let your pride and independence take a back seat, to be willing to change EVERYTHING and accept that you are fighting for your life when you had no idea.....

 But I am incredibly blessed with an amazing family, the bestest boyfriend in the world and a lot of wonderful supportive friends. I have spent the last few months in serious nesting mode. Preparing, gathering, hunkering down for the battle. Though I am pretty determined to not think of it as a war so much as a cleansing....a major cleansing!

 Lyme is caused by a bacteria called  Borrelia burgdorferi, a spirochete like Syphilis. They are easily transmitted from a tick bite. The longer they are in your system, the deeper they go. They are smart. They hide. They can affect any part of your body. They go nuts in the Central Nervous System. They like the brain, the heart and collagenous tissue like the eyeballs and joints. They cause massive inflammation that moves around without warning. They lower your body temperature and blood pressure. They like injuries, surgical scars, sugar and carbohydrates. Untreated they cause damage, infection and will eventually kill the host by some massive complication. There is a big fat lie (just one of MANY) about chronic Lyme, that people don't die from it. They do. All the time. From 'complications'... heart failure, kidney failure, encephalitis, infection and much more. From lack of adequate treatment by uneducated or fearful  Dr's; by being misdiagnosed and treated incorrectly.

 As for myself... it looks like I got this somewhere between 7 and 12 years of age. I had a definite tick bite after camping in Wisconsin when I was 7 and I spent some  time in the summers in Connecticut during those years in the early 80's when it was spreading like wildfire from the town of Old Lyme. (Though being in an endemic region is not necessarily a requirement as ticks travels easily on birds, deer or other animals.)

 So after around 30 years of fighting this thing without knowing it, I have answers. Doctors ignored my concerns mostly, or tried to treat by symptom or gave me low doses of antibiotics to treat whatever  infection was currently puzzling them.  I can't blame them. They didn't know what to look for. They didn't know what they were looking at. The symptoms are vast and change constantly.  Your blood work comes back normal, well...apparently you're fine! It really wasn't until I had been given consistent doses of steroids for allergies over the last 2 years that things ramped up to crisis level. Steroids are the worst thing you can do for Lyme! Want to find out if you have it? Take some steroids! lol.


 Now my life makes sense...ALL OF IT. It's taken months to grok this and I believe it will continue for some time. Having the opportunity to 're-see' my entire life is.....wild. Awareness IS everything.

 Now I am 7 weeks into treatment. My Dr asked for 2 years, possibly more. I have good days and bad. I am overwhelmed at times with both gratitude and grief. Some days I feel like the strongest person alive...others like I can't do it one more minute. But as of right now, I am getting better. I'm settling on a schedule so I can best handle the 4 days on treatment and the 3 days of detox... every week. I can handle the 40+ vitamins/supplement/ nuero support a day. I've figured out how make a daily list so I can keep track of each of the 12 that I have to take 3x a day or 5x. I'm cutting out all the things that aren't good for me. I'm changing my diet.  I'm learning how to fit in exercise, coffee enemas, meditaion, detox baths, infrared sauna therapy, rest, 4 doses of alka seltzer, vitamin & green foods smoothies, blood pressure readings, symptom charting, research, teas, essential oils, special foods, juicing, emergency supportive phone calls, dry skin brushing, spiritual healing tools and all the other things I need every day. I'm gathering all the tools I need to be pretty much housebound and isolated from the world. I'm walking through the fire baby...

and mostly... I AM GRATEFUL. I am already grateful for every minute of it. I feel spoiled by the amount of LOVE and abundance in my life. It's a new year and I choose to be overwhelmed with gratitude.

more soon...

I am none of these things...I have Lyme Disease.

Wow...I am truly amazed how much time has passed since I wrote here. I suppose that is the way of things with so much happening....or not (lol).

 So I have made it through my first week of treatment and herxing. Barely. Herxing to the uninitiated is the god awful reaction of the body to the massive die off of Lyme bacteria and the neurotoxins this dumps into the body. It is a never ending cycle of killing the bacteria and detoxing the poisons. The general theory is that this takes years, the longer you have had Lyme running rampant through every system in your body, the longer it takes. The process is actually rather familiar to me as I have done it over & over in my life unknowingly, just thinking these several times a year that I was SICK. More than normal anyway.
 My Dr after rethinking my treatment actually asked me to cut the original dose he recommended in 1/2 for the first week, fearing that the reaction would be much too intense. I am grateful! Actually at the end of the first day I was running around like a crazy person cleaning the ENTIRE house, doing stuff I haven't had energy to do in months and getting more than a little anxious about any lack of reaction. It was terrifying to have come this far and still not be 100% positive. Lyme is a clinical diagnosis and like a lot of people my blood tests came back negative. Had a clear MRI as well...which is great as at least it ruled out having developed MS from Lyme. But also scary when I've had seizures and other neurological stuffs. By the end of the second night and nothing, I upped the dose and about 5 hours later I was pretty sure I was dying. Lol. I went back to 1/2 the next morning... I have time and am not in any hurry, I discovered, to feel that HORRIBLE. The next two days left me with pretty much no doubt that I have Late Stage Lyme Disease. I have oscillated wildly between relief, anger, crushing sadness and hope since then.

 My main though at this point is how EVIL this disease is. As any of you who are familiar with Lyme or happened to watch Jesse Ventura's show on Plum Island know, there is irrefutable documented evidence that Lyme was man made. We have our government to thank for that, after importing  former Nazi scientists specializing in tick & mosquito borne diseases to work for us in bio warfare research. Plum Island is just a small skip across the water from Lyme,CT where this disease was first documented and named. You see the word INSIDIOUS used often when referring to Lyme, and with good reason. They created a disease that is debilitating... attacks any and every part of the body, often cripples the bearer, causes innumerable complications, comes with tremendous amounts of anxiety written into it and a doorway to the darkest places of depression imaginable. It is incredibly difficult to diagnose and even more complicated to treat. It is the most political and massively misunderstood disease in this country. Chronic Lyme is not even accepted by the medical community  and is ILLEGAL in most states for DR's to treat as they see fit. It is unbelievably expensive to diagnose & treat and unaccepted by insurance companies.So many thousands of souls across this country and the planet cannot get treatment and are suffering and dying! Not to mention that what treatment protocol's have been established are nearly BARBARIC! A never ending cycle of killing the bacteria and trying to support the body through absolute hell. Suicide is very common in the Lyme community..very, very understandably.

 So while my personal thoughts are in knowing and accepting having this fucking thing and TRUSTING in that is taking me forwards always forwards...I am having trouble believing that this is THE WAY out. I am in denial only that this suffering is the way to heal. I DO NOT ACCEPT THIS. I have been on a path of  learning alternative  medicine, spirituality, consciousness and the miraculous since I was very young. I have studied our energy systems, long known to the Chinese and India for thousands of years, my whole life. I KNOW there is a much bigger picture when it comes to health & disease than our symptom obsessive fear based Western Medicine tells us. It is my intention to seek out these answers, for myself and others. To find as better way to wholeness..because this is  UNACCEPTABLE.

to be continued...

rewriting past judgements & misconceptions.................


 I am weak, I am lazy, I'm oversensitive,  I need to get out of the house more, I'm a whiner, I am afraid of life, that I'm too sick all the time, that  I have phobias, I'm selfish I complain too much,  that  you don't believe in me, I'm a flake, a quitter, that I won't do what I say I will, the problem is in my head, I just need to learn how to think right, I just need to take better care of myself, I just need a job or a hobby, I just need to regulate my sleep cycle, I just need to change my life, I need to learn how to be happy, no matter where you go there you are, that I need to stop running away from things, that maybe I'm HIV positive, that I've done a crappy job of trying to find out what is wrong, that I just need to try harder, that I just need to have willingness, that I haven't faced life head on, that it's my fault my husband left me, that I'm negative, that I just need to jump in,  that you're disappointed in me and  tired of me....


I AM NONE OF THESE THINGS. I HAVE LYME DISEASE.

In The Gloaming

 God I love that phrase. How apropos, as I wait now in the twilight of my unknowing. Only a little bit longer to ANSWERS.... hopefully, many many many answers. I feel frozen; to talk about any of this...to make forward plans... to decide how I feel about anything... even to tell my damn therapist too much. Lol. The waiting is so much harder than I ever would have thought... I mean, my god, it's not like this just started...what's another week or two? Mentally I can work myself out of it, emotionally...not so much, lol.

 I'm alllll over the place this last week. Up down sideways. Everything makes me cry. One day everything is beautiful...the future shining. The next it's all shit and I can't imagine this ever ending. Often after a few days of feeling good and pushing myself, I wake the next morning feeling perfectly human...within an hour or so I start to feel my self go dooooown. I termed this the other day 'Crumbling'. I start gettin that 'wrong' feeling, then my joints or nerves start screaming...my head space goes to hell and it doesn't take long after that for my faith to start slipping. This week I am tired of being me.

 The fun new addition in the last few days is  searing arthritis pain in  my left  sacroiliac joint   (I had to look that up, been 20yrs since I took anatomy...I was pretty sure it was a real thing lol).  I'm glad I'm not in public much as i do a lot of gasping when I move suddenly. I feel old beyond words this week... my life has already lasted forever. I'm vaguely confused pretty often...I have to concentrate so hard to do such normal things. Sometimes I feel my brain just stop working...like a wall has been erected between what I know & how I can process it. Words don't mean anything for a moment or two...or I can't react in what feels like normal time to something. Sometimes my words don't come out right...or at all. Tonight was the worst that has been yet.
 I felt great all day. Working hard at organizing photos,  deleting everything tryin to clear my hard drive out  since Jordan the kind computer wizard said this was the issue.
 (As a matter of fact, I have worked so diligently at this over the last 4 days, I am writing this at MY OWN COMPUTER! It's actually letting me online...this is a first in the 4 mo's I've been here...crazy, I know.)

 Mid afternoon I started crumbling. I was extra pissed 'cause I thought maybe I had a free pass today. But... you push on. By early evening it was bad..I thought maybe a major storm was  a' comin. This could potentially have me on the couch twitching like a fish out of water until it calms down. But that didn't happen. Instead I was sitting at my computer when I started feeling really strange, like my brain was partitioning. I was trying to wait & see what was happening when Chris came in and I found I couldn't speak. It was like a giant metal door had slammed in my mind. I could think about speaking..I knew HOW to do it...I just couldn't get anything out. It felt like my mind had separated from my mouth...like my mouth couldn't remember. I think it only lasted four or five minutes but it scared the shit out of both of us. Lol. Jaysus, as they say in Paddyland.

So anyways. Tomorrow is a new day. And in case any of you are wondering, medically speaking, I'm ALL over it. I've studied everything I possibly can for the time being, know allllll there is to know about Lyme. And I'm in good hands. It's no accident that the Universe got me up here to the Lyme capitol of the world! I've found an amazing clinic that deals only in alternative methods. They work with people who have cancer and MS and the like whom have given up  on or been failed by traditional Western medicine. I feel very strongly I'm in the right place. More about this later!

"Reality is something we rise above."    Liza Minnelli


to be continued...