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Wednesday, January 27, 2016

UPDATE 2016 on my Lyme & Coinfections

Hi, much time has passed since I last posted to this blog.   I have been through some major protocols in my battle against Lyme & Coinfections.   I have so much to update you on, as far as my journey and what I have learned since I last posted on this Lyme blog.   I have graduated a Certified Aromatherapy course and have published my first book, 'Thyme Essential Oil.....The Farmacy Cabinet Series' on Amazon Kindle.   Essential oils helped me so much that I decided to become certified and to write a series of essential oil books, in hopes of spreading vital information on the healing components of various essential oils.   I am still struggling with Lyme, although my last bioresonance test last year showed that I had beat African Trypano, Babesia, Bartonella, and CPN.   Although, my Lyme went from 30% to 70% on the analysis report.   In addition, I had a couple equine pathogens that I had picked up and I know EXACTLY where those came from.   I have used my Spooky2 Rifing equipment to help me and recently ordered a radionics plate for my Spooky2 generators.  I plan on using it for medicinal purposes, also.   I have so many gadgets, I need to read my first post,  so that I can review what I discussed in that first blog.   My symptoms have changed drastically since the last blog.  So much 'water' has went 'under the bridge' over the past couple years.  Some good, some bad.  I am hoping to have my Lyme journey book published by March 1, 2016.   I want it to be printed in paperback, as well, by May 2016, since May is 'Lyme Awareness' month.  I will make this post short today, since I'm working on so many sites for my official 'author' sites.

Saturday, December 28, 2013

Introduction to my Living With Lyme in Kentucky blog.....

DISCLAIMER:   My blog is a personal recording of my personal journey to heal from Lyme disease.  It is NOT meant to be used to diagnose or treat ANY medical condition.  You must see your medical doctor for all health issues.  I am not a medical doctor and cannot treat or diagnose!!  Preferably, find a Lyme Literate Medical Doctor when it comes to Lyme (the great imitator).  Lyme can mimic over 300 diseases and is a silent epidemic according to many Lyme medical doctors.   Testing for Lyme is limited and the testing process is not dependable according to LLMD's.  Many doctors will treat ACUTE Lyme clinically without a positive test result.  IT IS THE CHRONIC LYME (long term Lyme treated after 28 days of antibiotics) THAT IS DENIED in the medical world and this is often misdiagnosed as an autoimmune diseases instead of CHRONIC LYME. Get proper medical care with a LYME LITERATE MEDICAL DOCTOR ASAP if you even suspect you might have Lyme....DO NOT let this go untested!!!!  This blog is my personal journey and includes my personal opinions ONLY.....  I hope that by sharing my Lyme experiences, that I can be a support to others fighting the same battle...  (Forgive me for the grammar and punctuation mistakes in this blog...I'm not an editor nor an English professor....I'm just a simple person trying to share my journey)...:) Blessings....

Hi, My name is Karen.   I live in Central KY.  I am a proud mother of a 32 year old professionally successful son and 4 beautiful grandchildren that I will refer to as my "grandbunnies".   (Why 'bunnies'?  I love rabbits.  In fact, I'm in the process of starting an online soap/candle business using rabbits on my logo).  I am an open minded person that doesn't hesitate to share my personal journey.   I am transparent in many ways....(I suppose that is the 'SOUTHERN' side of me).    I share out of love and the desire to help others.......  I have been fortunate to work in a variety of fields over the years and most recently as a US Merchant Marine working on the cruise ships in the Hawaiian islands and also in Europe.   I do have a love for the health sciences and natural/alternative healing.   In addition, I enjoy home decor, landscape design, travel, photography, and doing crafts.   I will share these things in my blog from time to time....

This is a personal blog that I have designed because I feel compelled to share my personal Lyme journey with others that are searching for information..... Although my Lyme journey started many years ago, I was formally diagnosed in September 2013.   It has been amazingly difficult getting the proper medical care during this journey thus far... This, is the reason that I want to document for the world my journey and my thoughts throughout this journey...   I was having seizures (later proved to be EEG positive) and begging doctors to do something about the heart palpitaitons (pvc's) and they sent me home multiple times from the Emergency Room with "we can't find anything" to "all we can find is your low on calcium"..  (A couple of those ER visits recorded my heart rate as low as 38 and 40's and they still sent me home!!!!)    I couldn't believe that I felt like I was dying, yet they dismissed me and even a local University ER doc laughed at me when I asked him to test me for Lyme and told me, "There is no Lyme in Kentucky"...   I seriously couldn't believe I was being dismissed as sick as I felt inside..   My internal thoughts were telling me I was dying.   I realized I had to be my own health advocate and started to Google my way back to health out of complete desperation.....  Thank goodness for Google and a private online lab, (privateMDlabs.com), I was able to pay online via privatemdlabs.com and go to my local LabCorp location (private lab has a national contract with LabCorp for drawing blood specimens) to get a very INEXPENSIVE ($59.99...much cheaper than going through a doctor's office or hospital) Western Blot Lyme test ran MYSELF without my doctor's orders and without insurance protocol that dictates whether a doctor can test you or not......    (I didn't have the bulls eye rash that many physicians require for the ELISA test and when I tested my private ELISA, it was negative.....(Insurance won't allow a physician to go to the next step of testing with the Western Blot if the ELISA is negative)).   My ELISA (also $59.99) was the first test I took and it was negative, but since I was paying myself and didn't need insurance to approve the Lyme Western Blot test, I went ahead and tested with a Western Blot Lyme anyway and it was POSITIVE!!!    My doctor couldn't believe how I was able to get this testing done without him ordering it and he was amazed that I was able to literally diagnose MYSELF!!!  His mouth almost dropped to his lap.  He had denied me this testing himself previously and asked me several questions about the testing.   I thought he would be happy and was expecting him to be glad that I had found out the true diagnosis......YET, his reactions to all this OVERWHELMED me.   He sat there on his stool with the test results in front of him and what came out of his mouth was unbelievable.  He DENIED the results and told me that they were NEGATIVE!!!   I was in shock and didn't know how to handle this...(I didn't realize at the time the BIG POLITICAL STIGMA OF LYME).  I remained calm and realized that after questioning his NEGATIVE diagnosis a few times that he wasn't going to budge off of his NEGATIVE misinterpretation of my test that clearly in RED BOLD WRITING SAID POSITIVE/ABNORMAL....SO, I calmly and kindly asked him for a signed statement saying  my results were NEGATIVE according to him...  He had his nurse call me 10 minutes later and said, "Karen, Dr. E..... is sorry, you are POSITIVE and he is calling in Amoxicillin antibiotic for you".. I told her, "I need Doxycycline for this" and she replied, "Dr. E is calling in Amoxicillin and will treat you for 28 days and that is ALL he can do".     I was devastated and knew that I had to find a new family doc after 26 years of faithfully following this one particular family doc.   I ordered my patient file and after reviewing details of my file.....I saw where I most likely had the bulls eye back in the 80's and my doc sent the skin lesion off for a biopsy that failed to diagnose me with Lyme.  I indeed believe now that I've had Lyme since the 80's and  regrettably  not diagnosed correctly...     I continued to have flu like symptoms and intestinal infections throughout the next 20+ years, not to mention, the joint problems that came and went and the pain issues that would literally move from one spot in my body to another ..   My doc never put the pieces of the puzzle together.  In fact, this last battle in Aug/Sept 2013 accumulated into a miserable life threatening situation progressing into dizziness, fainting, seizures, air hunger, weakness beyond words, heart palpitations (pvc's), and brain attacks (pressure and squeezing like a vice on my brain!!!  I did beg my NP to test me for mycoplasma and she hesitantly agreed prior to me testing for Lyme.  My test results were positive IgG's to mycoplasma (a common opportune/co-infection of Lyme disease) and still my doc told me it was nothing to worry about and dismissed treatment...(Thank GOD for my doc in Nashville that gave me a pulsing long term antibiotic protocol for the mycoplasma immediately when I visited him shortly after finding the Lyme positive results  (Ya see, I pulled a loop hole to get proper care until I could get in to see my Lyme Literate Medical Doctor because he was booked 6 months in advance and I needed care ASAP.  It just so luckily happened that the same antibiotics for treating mycoplasma were used in Lyme treatment and this would work until I could get to my LLMD appointment.)).  I immediately changed family docs to another local doc that is originally from India.  I was hoping his Indian culture would give me privy to a doctor that knew western and eastern medical protocols.  He was familiar also with ayurvedic medicine and would maybe have a heart over the political stigma of Lyme.  HE DID!!!  He immediately changed my medicine to Doxycycline and I told him I was going to Nashville to get the rest of my protocol.   I informed my doc in Nashville as to the whole picture.  He told me he wouldn't treat me for Lyme, but he would treat me 1 year long term for mycoplasma..  So, both of these angels helped me to get the protocol I needed.  Shortly after starting the Doxycycline, the cardiac issues got worse and thank goodness, I had a super insurance policy that covered up to 8 weeks of PICC line antibiotic.  My family doc changed me from Doxycycline oral to a PICC line of Rocephin for 28 days.  I stayed on the Azithromycin on MWF and on the Flagyl 12 days out of the month....The PICC line literally SAVED MY LIFE!!!  I continued taking the pulsing oral antibiotics and together this pulled me through my toughest days .....

Even though my LLMD appointment is not until January 2014, I wrote to the LLMD vis the patient portal and told him my story in depth.  He agreed to consult me via phone a couple times and then I took IGeneX lab tests for him.   A month after the PICC line was pulled on Oct. 28th.... my new family doc told me, "Let's forget about the Lyme".  He feared for his license if he treated me longer than the 28 days.    My LLMD did take over and on Dec.13th he changed my my oral Doxycycline.to oral Minocycyline.  YES!!!! MINOCYCLINE has changed my life within a few days!!!!  I have fortunately been free of many of the symptoms of nausea, weakness, and air hunger since starting the minocycyline.  In addition, my LLMD suggested I start on herbal protocol to treat the Babesia at the same time.  He suggested Artemesia (wormwood) and Cryptolepis.  I will be starting this tomorrow and I hope that the dizziness and lightheaded feelings will disappear, along with the anxiety and panic attacks.  I am so happy for all these improvements over the past year.   Although I was diagnosed officially on Sept 6, 2013, I believe I've had Lyme for 20+ years and have suffered extensively over the most recent 7 years intermittently.  (The past 6 months being the worst).    I look back on this journey over the past few months since the official diagnosis and cannot believe the 'miracles' that happened in order that I get the proper care.  I had to learn quick and read fast to keep myself on top of this issue.   I've had to administer my own immune building supplement protocol according to the books that I've read since being diagnosed.  I follow Dr. Charles Stratton's protocol from Vanderbilt University and use biotin, NAC, etc... in helping my immune system.   I take Milk Thistle, Graprefruit Seed Extract, Selenium, B vitamins, Vitamin C protocol, Ozone water, Colloidal Silver, zinc, magnesium, detox baths in Epsom salts and hydrogen peroxide.  I use infrared sauna for detoxing and a multitude of other protocols including Samento, homeopathic detox and parasite cleanse, Dr. Hulda Clark parasite cleanse, etc...  Moreover, I also use the Bob Beck protocol (Magnetic Pulser, Silver Pulser that helps cleanse the blood and also can be used to make colloidal silver), and an Ozone machine for drinking water).  I document and journal my daily feelings, medication and significant issues with my treatment.   I started antibiotic protocol on Sept. 6...so as of Jan. 6, 2014, then I will have completed 4 months of treatment.   I realize the importance of natural healing, antibiotic therapy, and immune building products......It is amazing to say the least....  I take NO pain medications; only immune building protocols and antibiotic therapy.

My original family doc said he treated NOTHING clinically and would ONLY go by test results...Yet he tried to even deny my test results, didn't he?)....  He was to be commended for referring and testing, but all the tests came back 'normal' over the years according to him.  (I question even that now that he claimed my positive test was 'negative'.)  It's just that all those tests do not show Lyme...it is a special test that he denied me.  My multitude of test results were always 'normal' according to him... I, indeed, think that it had come to the point that he silently may have been thinking my complaints were psychosomatic.    I cannot begin to explain the fear that I had going through me and the disgust and astonishment when my local "yocal" medical world couldn't find the problem and my own doctor patted me on the shoulder and told me to take Prozac and come back in a month!!!!

At the time of initial testing, I had not studied Lyme and it's political issues in the USA.  I had NO clue why a doctor would want to evade the CHRONIC Lyme issue...especially a doc that I had known and trusted for so many years....  I didn't realize that Lyme had such a hidden mysterious political stigma in this country....I found out the intricate political, medical, and emotional aspects of Lyme by reading and studying the subject from that day forward.....  I continue to read everything I can get my hands on in my battle against Lyme and it's 20+ co-infections that it can carry with it.....   I've found out that transmission is not only thought to be from a tick bite, but also via mosquito, horse fly, fleas, blood transfusions, etc...  Mice and deer carry this spirochete and can be transferred via ticks that use the mice or deer as hosts.   I routinely listen and search through You Tube video's and other sources including peer reviewed articles and testimonials for additional knowledge.

I have remarkably improved since Sept 2013 and I 'pat my own self on the back' for being my own health advocate and orchestrating a treatment protocol and finding my own medical professionals for piece milling my treatment together until I can see my LLMD in January 2014!!!   I write this blog for YOU, for those that are scared and left to swim against the stream of denial of CHRONIC Lyme in our medical world today.   I so hope something I say on this blog can spark the thought process that you need to take back your health from the ravaging disease of Lyme.  I may make mistakes and interpret things differently than some.....I am only human, but I am encouraging you to do your own research....  Lyme is a silent killer and as I mentioned earlier, it mimics over 300 diseases....if you suspect Lyme, get tested immediately!!...tell others to test........spread the information to others.....share your own journey......We can better overcome our issues if we all share our experiences, think critically,  and allow other's to use our journey's to better themselves in some way....  I'm fighting diligently to get my life back....I am walking normal again and can breath without pain.  I am not feeling the stabbing pains of lyme in my abdomen anymore and my mind is focusing back on other things again.  (For weeks, I had to completely submerge myself in Lyme studies and treatment).   I am improving daily. I have had a great holiday season....  I want to spread the awareness of this devastating disease.   I am open to speaking for free to civic groups or church groups on Lyme awareness...  Hugs & Blessings.........

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