Since I am my own best Advocate, I've kept a record of all the things happening to me after each Dr/practitioner appointment as well as charting of my home therapies/outcomes as I am able. All of my medical team will want to know about ANY CHANGE, good or bad. Specific entries from my physical journal that might help you will be made here as I'm up to it. Yes, this info is very personal.. not something I would normally want to shout out to the public... but I'm posting it for you, the chronically ill with “fibromyalgia, chronic fatigue, myalgic encephalomyelitis, etc. I feel your fight and I want to do everything in my power to help you.
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My body is toxic (my liver is weary although all basic lab tests are always “normal”) and it's a good guess that your body is also toxic. This is a snapshot of my beginnings. Ask yourself whether you might have been exposed to some or all of these things as well.
In utero, my mother and I lived in intense stress. I was exposed to cigarette smoke and alcohol from conception on as far as I know. In early childhood, I ingested tons of 2nd hand smoke, received poor nutrition and loads of antibiotics [chronic ear infections and tonsillitis /adenoid infections] and was subjected to ongoing, horrendous, traumatic dental work (think: MANY cavities from poor nutrition and huge sugar intake= mercury fillings and drillings without being completely numbed up [I was petrified of the dentist until I had children of my own and searched out dentists with reputations for excellence in skill and bedside manner.]) I lived in constant mental/emotional trauma in a VERY dysfunctional family. I was orphaned as a young teen. My young adulthood was shadowed in stress, intensifying with an unhappy marriage and divorce with 2 small children when I was just 23 yrs old. Six years after that as a single parent, I permanently damaged my low back/nerves from a nursing injury (more stress, more prescriptions.) Later experiences have contributed to poor body function: severe depression, PTSD, premature menopause and “FIBROMYALGIA” (MUCH more stress, more prescriptions.) The world “going to hell in a handbasket” (pollution in our skies, water and soil worldwide, and our “foods” [laced with fertilizers and growth hormones, preservatives, GMO, sugars and/or aspartame-poisoned killers, etc] also make wellness a huge challenge. We all need to consider the things that our parents were exposed to before our conception and during the pregnancies with us, the bad training (think “food pyramid” for starters) and bad habits they had and how that transferred to us. How can we expect our bodies to fight off vicious diseases???
My doctor/s will need to fine tune and balance my treatment so as not to send me into such a severe symptom overload (a Herxheimer reaction) that I'm unable to function.
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NOTE: In November 2018, we began the full-time challenge of moving home and business from northeast WA state to the southwest... to the OCEAN. My journals from April 2017-August 2019 are packed away.
I will update this page as I find them!
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HUGE CHANGES TO REPORT AFTER www.lymestop.com TREATMENT
April 25, 2017 1 month out from 2nd Lymestop appointment/new infections identified and more treatments given.
I have returned to work and “school!”
Glorious spring has finally arrived at our little hamlet in remote northeast WA state and I am spending much more time outside in the sunshine. I see my daffodils beginning to peek out from their protective coverings to smile at me!!! My husband, my Service Dog and I celebrate the warmth of the day with my goats, llama, cows and (outdoor) kitty. During a “bad day” yesterday, I even raked up some leaves and assisted my hubby in goat hoof trimming! Before Lyme treatment, I would have been curled up in bed wondering which day would be my last.
I’VE BEEN ABLE TO RETURN TO A PART-TIME WORK SCHEDULE IN TOWN IN OUR NEW OFFICE! I'm even in the midst of taking some continuing ed courses, which I basically hate. (I'm a very right-brained person and real estate is VERY left-brained, analytical LEGAL stuff. Ugh. They would be tough courses for me to absorb if I wasn’t sick, but, with neuro Lyme... huge torture. Yet, because of LymeStop, I’m able to plug along)!
April ?, 2017
Yesterday afternoon, while at the farm and bending over to pick up some (very light) things in the yard, I began to experience moderate chest pain behind the sternum. It would subside if I stood up and breathed deeply and slowly, but returned each time I bent down. Today, the chest pain is moving around my entire chest wall and I have “something” strange going on in my left arm. I’m thinking maybe I still have Lyme in the heart or Babesia in the small intestine.. I called Dr Tony and will make an appointment for next week. I have been herxing basically this entire month after my check-up. We discovered that I have the the genetic defect that inhibits detoxing.
Today also means Day #2 out from the huge drama/PTSD triggers for me in our home. All of that is behind us now but the “crash” could still be tough. Today is also Day #1 out from my raking of some yard leaves, assisting in goat hoof trimming and cleaning up around the garden area a bit. With that said, I have been strong enough to make organic goat milk sour dough garlic/chive bread and sweet cinnamon rolls, which I’ve been waiting FOREVER to eat [I was eating gluten free until this last appointment. Dr. Tony said I could go ahead and give bread, in small amounts, a try! (I’m hoping my yeast is still working!)
March 29, 2017 Returned to LymeStop for 1st Follow-up appointment. Findings:
- I’ve shown 40% improvement by comparing this most recent symptoms checklist to the 1st one I filled out 30 days prior to my 1st appt. Dr. Tony was SUPER impressed and told me we might be able to expect complete healing within a yar! (Healing doesn’t mean all Lyme+ other bugs are gone from the body but that the immune system and other body systems have gained enough health to fight the enemy! [At least that's how I understand how successful Lyme treatment works I don’t expect to feel like I did 15 years ago before the Lyme symptoms crippled me, but I do choose WELLNESS!])
- Lyme in left kidney only (NO OTHER SIGNS OF LYME ANYWHERE!)
- Babesia small intestine
- Blood infection
- Bronchi infection
- these last 2 explain why I felt like I was going backwards in healing. Increased fatigue, pain and shortness of breath could be caused by these infections. He “zapped” them but I’ve not shown improvement.
February 7, 2017 starts day #1 of my 8th week post-treatment. I wanted “stimulus” and I got it! I’ve had to really rest and “lean into” the cleansing symptoms that came with the recent, beautiful (swim) exercise I've had. Finally, I had a “good” morning yesterday and ventured into the (little) city to accomplish some (uncomplicated) things on my “to-do” list, some of which I've looked forward to for months.
The roads were atrocious even the 2nd day after our unusual massive “snow dump” and the drivers seemed oblivious to the dangers. On top of that, I left my driver's license at one place (across town), which I had to go back to get... in crazy traffic, of course. Then, one of my vehicle warning lights came on and I ended up at the Jeep dealer (at closing time so I was pressed to get there) to get it checked out. Most of the “fun stuff” I had come to the city to do didn’t happen but I’m so thankful I got back to my little abode in one piece. The GOOD NEWS is that I didn't have ONE panic attack. I was NOT STRESSED OUT AT ALL. The nervous system was not reacting in “overload mode.” I took a hot shower, fixed a simple, healthy ORGANIC dinner, curled up in bed to drink my nighttime “Calm” magnesium drink and read more of the good book I recently found. I slept like a baby. Now, that’s progress!
Today, I’m paying for going off Dr. Tony’s diet regulations yesterday... I expected this. I feel “poisoned.” I’ll go very easy, do some in-home detox treatments and maybe, if I’m strong enough this afternoon, GO SWIMMING again. My vacation is coming to an end soon... I don’t want to say “good-bye” to the pool!!!.
February 3, 2017 I am now 7+ weeks out from my initial appointment with Dr. Tony at Dynamic Health in Idaho www.lymestop.com. WOW. He told me to “expect anything” and he wasn't kidding.
This morning was my 2ND SWIM DAY!
Yes!!!! I love swimming/water, but I've not been able to swim since I got sick 15 + years ago; not only have my muscles weakened from lack of use but my body couldn't tolerate chlorine nor adjust to the water temps (which, in turn, caused more muscle cramping and pain) and my severely-fogged brain could not remember HOW to swim! “Do I inhale under water? No, that can’t be right. Can I turn my head far enough out of the water to inhale? Nope. How do I ‘row’ my arms? Are my feet kicking? Oh, I’m soooo tired I need to get out of this water and go to bed.”
My little min-vacation is such a huge blessing. I actually have the strength to care for myself if I am organized and go slowly. But back to the swimming victory: I put my formerly-way-tight-but-now-fitting-perfectly swimsuit on, then my sweats, then my winter coat, boots and gloves (it's WINTER here in the northwest!) and get my Service Dog ready to go sit poolside to watch me swim (this indoor pool belongs to the private resort and has significantly less chlorine. I think they use reverse osmosis or something else to keep the water clean.) Note: before Dynamic Health, NO WAY could I have tolerated this cold pool [about 86 degrees I think the manager said] nor the echoing sounds... even tho I’m the only person in the pool area! Today, the sounds of the ice-rain dropping onto the (temp) “balloon roof” are BEAUTIFUL... like music! I swam as my muscle strength, lung capacity and heart rate would allow. Breast stroke (not great but I did it a bit... range of motion in neck is bad), side stroke, back stroke, under-water gliding (with my eyes open! Heehaw!) FUN! It's now evening and I'm wiped out but oh so happy to have had this experience. I sent Dr. Tony’s office a “PRAISE GOD FOR PROGRESS” email to encourage him to keep on keeping on! He is changing lives... lives all over the world! He and his staff are celebrating with me and will share my testimony in the binder placed in their waiting room for patients to be encouraged by.
February 1, 2017 Just taking each day an hour at a time. I’ve had plenty of rough days and am sort of feeling as tho maybe my body is “plateau-ing out” with the bacterial attack/herxing from that. Currently, I'm recovering from the 4-hr drive to a little hide-away for a little mini-vacation alone, just my Service Dog, Max, and me. I ventured out to the grocery store for a few things, drove around the town a bit and went to the library to finish out our little outing. I found an easy-to-follow book on de-cluttering my home (and keeping it that way.) It's more of a lifestyle/mindset change than anything... and I need it! Thank You, Father God, for leading me to this little book of wisdom. Please give me the neurological system to read and comprehend it and the remembrance, the strength and the focus to carry out some of the recommendations when I get home.
January 15, 2017 2 GOOD DAYS!!!! Wow... what a wonderful thing! I was able to work at real estate a bit, go to town, attend a professional meeting.. and be a viable part of the conversation!!! I fatigued fairly quickly but I’m dancin’ on the inside!!!!! (As a side note, I did see a local MD who had no answers for me except to suggest I “get counseling” for the Lyme (which his mother had, went on antibiotic and got over quickly without complications) and get off my pain meds. The staff later lost my records. This appointment to “establish care” was expensive and paid for out of pocket... we have no insurance.)
January 6, 2017 We traveled to a more advanced hospital than our little hospital to see if an ekg/ blood tests show evidence of a former heart attack since my chest is still sore with some light stabbing pains. I called and reported to Dr. Tony along the way as he asked me to if intense reactions occurred. Tests are neg. I will establish care with a medical doc in my area to see if he thinks follow-up testing should be done (could be a small blood clot in the lower left ventricle.) Dr. Tony thinks what I think: it's the body's adjustment to the immune system going after the bugs!!! He’s very happy that I went to the ER to get checked out and he was very encouraging over the phone. He’s a good man.
January 2, 2017 Feeling a bit better tho brain doesn’t feel “normal”... not even my “normal.” Then, in the early evening, while relaxing in my craft room-- BAM! Symptoms of an acute heart attack come on. I breathed through the chest pain that traveled from one side to the other and from front to back to front for about 20 minutes. I had decided that, if the pain hadn't let up by then, I'd go to the ER. It did subside little by little but it had me on the floor, sitting erect, just focusing on muscle relaxation and slow, steady breathing. (I only go to a medical doc or hospital as a last resort.) I praise God that the severe pain dissipated... I think it's my body trying to fight the infection in my heart.
January 1, 2017 A frightening thing happened: Did I just have a mini-stroke, or is my immune system really working hard to clean out and repair my brain? I was working on emails and suddenly I realized that MORE of my MEMORY of my own life was GONE... I couldn't remember my son's age or birth-date (he’s 31 yoa... this info obviously is stamped in my long-term memory. I've not had long-term memory loss before!) I can't recall my own age of when I hit certain milestones in my life. I can't recall when my husband and I got married or what significance that the date “January 1” in America has. In tears, I tell my husband I feel like I've been removed from my own life! I'm noticing a slightly-elevated rash on my body and I feel sort of “tingly” and weak... like I don't have enough oxygen.
Later afternoon: huge pain along spine and I am completely exhausted... as tho I'd had a grand mal seizure. I think it's my body trying to fight the infection systemically, really honing in on the nervous system since that's where the worst plagues have been focused thru the years.
December 27, 2016 Wow, I’m sick. The neurological symptoms have really escalated and, since that has always been one of my biggest issues, I'm sort of scared. There's no way to turn off my immune system/magnet treatment. I'm really focusing on not panicking... Dr. Tony told us right out of the shoot, “Expect anything.” “Any change is a good sign.” Father God Almighty, give me the courage and strength to bear this.
December 15-20, 2016 NEW LYME SPECIALIST!!!
www.lymestop.com treatment is already a success!!! I had increased symptoms, even new symptoms, coming on right after the 1st treatment, which is SUPER! Dr. Tony Smith's in-clinic treatment is very “outside the box” of western medicine and, I admit, I smirked a few times... but I'm super excited to get on the other side of this war inside my body! I was herxing pretty strongly after I finished my 6th treatment but my loving, caring hubby took super good, attentive care of me the whole time. All of my 40+ symptoms were escalated (debilitating) + a new sensation: kidney (area) pain. My body is already going to huge change in this fight.
Dr. Tony's after-treatment protocol is strict and I add many additional detox procedures to deal with the die-off so I'm expecting very good things to happen (coffee enemas, castor oil packs to abdomen, infrared sauna, getting out in any sunshine that can be found, hot magnesium drink before bed.) I’m soooooo thankful for finding LymeStop. I’m also super thankful for the online support group, not affiliated with Dr. Tony's office but started/maintained by some of Dr. Tony's patients. We all need to STICK TOGETHER in continuing to fight for life against Lyme. (See “links” page for more info or contact me.)
SIDE NOTE (emotional stimulus): November 9, 2016 President-elect Donald Trump! I don't attach myself to any specific “party” but I am very passionate as a patriot. This last year + has been a challenge for me emotionally as I watched the defacing of candidates and this nation unfold during the campaigning/ debates. With this election/national upset (a civil war might be brewing,) I see so many changes, bad and good, possible. I have to be very careful to consciously maintain emotional, psychological, spiritual and physical homeostasis or I'll be even more crippled with symptoms than I am now. Advanced Lyme Disease controls every aspect of my life.
September 5, 2016 I continue to deteriorate without specific, intense Lyme treatment from a Lyme expert. The (newest) naturopath I was seeing did find low vit D on a blood test and also spoke clearly to my husband and I that I need to live in a more invigorating community with more people/more things to do... that, with my “people” personality, we're actually inhibiting my healing. I have known that for years... it was nice to have a dr agree with me . We're still searching for a Bible fellowship that wants to get serious about who the Hebrew Yeshua Messiah of Israel really was and learn, together, how to do (c)hesed [God’s Love] according to how Jesus lived. It is exhausting and disappointing. We are interested in being intimately involved with others who are like-minded (somewhat of a communal living mindset, tho not necessarily on the same property.)
I feel like I’m losing more of ME. I've lost confidence in my card-making abilities (see the HOBBIES page on this website);. my craft room is a disaster since I took almost everything to the beach with me but never did ever settle there. Lyme victims don't do well in chaos and that's what I've got going on... in my “haven” of a craft room as well as all over our huge home. I'm completely overwhelmed and feel like I'm losing the fight in me.
The good news: I was able to maintain the farm chores while my husband was out of town. That’s HUGE.
June 30, 2016 ONE YEAR INTO INTENSE TREATMENT FOR CHRONIC ADVANCED LYME DISEASE AND CO-INFECTIONS! Recently turned 60 yoa. Have been crippled by (undiagnosed until June 2015) Lyme Disease for 15 years as of this writing.
Dr. Gibbs has taught me that the body has to be ready to detox heavy doses of die off from the Lyme spirochetes and their buddy co-infections. I see this first year as accomplishing some stability in that arena; making HUGE lifestyle, diet and pain management changes is no easy thing but I'm getting there. Healing EMOTIONAL SCARS= lots of my work focus.
Much has changed in this past year, the biggest upset of all being that I've got to change doctors (someone closer to where we have our permanent home/ do business IN REMOTE northeastern WA state.) Trying to live alone at the beach without my husband and in cyclone storms turned into Disaster City. Trying to find an expert with as much diversity as Dr. Gibbs has been, so far, impossible. Instead, I've tried putting a team of medical practitioners together, none of whom claim to have focused intently on bodies plagued with chronic Lyme disease. (Still, I'm super thankful that these experts in their own right live close enough to me that, for the most part, I can drive to the treatment and drive home the same day... no eating out, no motels!) I currently have a Japanese acupuncturist (20 years experience, very compassionate/ just fun to be around and excellent at working on gut healing (STUDY THE GUT-BRAIN CONNECTION!) who is a mountain pass and 60+ miles away. In that same town, I also have a very kind, caring Chinese acupuncturist who can do the “big Moxa” that Dr. Gibbs has every confidence in to help detox and balance the body (she taught me how to do little moxa at home but I've not found the time/brain to incorporate it into an already treatment-packed day.) I found a Naturopathic doctor 3+ hours from us who will address all the dietary issues, and my regular chiropractor [graduated from the same Chiropractic school as Dr. Gibbs] who lives and works locally in our small community. What I DON'T HAVE is an expert in Lyme Disease who we can afford to carry out long-term treatment with. We're still on the hunt.
July 28, 2015 One Month Under Dr. Gibbs’ Care (see links page for his info)
Living alone 10 hrs from our farm in order to get proper medical care for this deadly disease is very odd but sweet at the same time. (The isolation at home is stifling.) I'm super happy to say that I'm managing (haven't been able to do that since the onset of Lyme) and am, of course, LOVING THE OCEAN, my fantastic new community and my tiny, easy-to-clean house.
Have received 2 gentle chiropractic adjustments, 3 Moxa treatments on acupuncture points with acupuncture needles in ankles (had “BIG CHI” reaction!), am up to 6 drops per day of an herbal supplement for the neurotransmitters and have given myself numerous coffee enemas as per doctor order with good results. I am wearing a band 24/7 that helps reduce electro-magnetic interference with my body. I finally received my book, The Complete Illustrated Guide to Chinese Medicine, and I am slowly becoming familiar with some of Dr. Gibbs’ ancient Chinese medical treatments. This is WAY OUTSIDE MY COMFORT ZONE; I was a nurse prior to getting sick.
- Spoon count today= 4/10. I’ve had more “bad body” days than good days since treatment began but I am able to manage living alone if I keep things SIMPLE.
JUNE 2015 BEGINNING OF LYME TREATMENT
It’s not “fibromyalgia; it’s chronic LYME DISEASE and CO-INFECTIONS.”
Those words shocked me... and relieved me at the same time. I knew I'd been just thrown a curve ball... a GOOD curve ball... but with the right skills, maybe one I can hit! I have a ton to think back on, to consider and to learn, but I'm game. For far tooooo long, I've felt like I'm dieing but can't die. Chronic Lyme Disease, as I was soon to find out, does that to its victims (and yes, it actually can kill victims.) Dr. Ed Gibbs, a naturopathic chiropractic acupuncturist master of Chinese Medicine, has taken very seriously this epidemic called chronic Lyme Disease. He works at and teaches his patients to work at strengthening the body in order to be equipped to fight the battle toward recovery. I praise God I found this doctor! Go to www.gibbsnhc.com
Remember, this is NOT traditional western medical treatment! My husband and I have chosen to go the “alternative medicine” route from the get-go.
