What You Need to Know About Lyme
TODAY I share our story mixed with A LOT of information and truth from reliable resources that assisted us..
Disclaimer: I am NOT a doctor or medical professional. I share ONLY what I experienced and the path I chose for my personal recovery.
Although, I am better today, I am not what I once was. It took years to develop these pages. Some of the details of our journey that I and my family have experienced are graphic. They are the truth.
I guess it takes something happening to you before you start to look, listen and investigate. Now, we need to share what we have learned.
I have often thought. "Why would people believe me?" "Rejection" hurts. I know this first hand. it has happened. Yet, if I did not try... I would be going against everything grain of my being, what I believe in. I don't want to stay isolated from family and friends, anymore. I DO NOT want to watch others in this pain and struggle, as I did..What if it was my daughter and not me? I need to do something!
It took my daughters words.. "Suck it up, Cupcake!" We need to do this. She said "Mom, you taught me to help others! That is what matters most!" My response "OK..then.. Let's do this!"
FYI...Some good news first It has taken time but I have have found doctors, nurses and others who have taken a stand for their patients. They are unselfish individuals who put their ability to practice medicine on the line just by sharing their knowledge. I have compiled a list of resources. to give those of you searching a place to start. The internet and social media definitely has its "Bad Points" But, if it were not for people creating websites, blogs, posting videos, publishing books, appearing at events and posting to social media and sharing there stories, I would have never found the resources to help myself. Literally, Stand up and Save myself from much worse medical issues.
Our story: When I was finally was forced to seek help it was because others were noticing something was wrong and when Thomas found me on the bathroom floor my heart was beating so fast and so hard he could feel it. My ears were ringing. I was freezing cold and than hot. My body shook and shivered and I couldn't think or move. I hurt so bad. The heart palpitations were a new thing. I WAS SCARED!
Prior to this I had a moment with my affectionately called "little old men" they had been noticing the changes in me. These lovely gentlemen only confirmed what I already felt.. Something was wrong. I had already been googling my symptoms and had narrowed down the options to those that made sense. So, when Thomas and I arrived to the clinic, I shared my research with the physician that was assigned to assist me. I included that I had noticed the gradual changes since 2010, when I was first bitten by a tick. I told them I had taken antibiotics back then. I shared I had been bitten since then but with no sign of a bulls-eye. I explained that without health insurance I decided not to seek treatment. I had not taken any other antibiotics except for when I had that sinus infections in the last 5 years. I shared my family history and asked the physician to test for Diabetes, Heart issues and Lyme Disease because these made sense to me. The physician suggested checking my Cholesterol and I agreed.
I also shared that I was in intense pain and that I do NOT do drugs. I have ALWAYS limited my consumption to over the counter pain medications and ONLY when absolutely necessary. I admitted that within the past two weeks I had taken more than I had ever taken in my life, just so I could get through each day.
PERSONAL NOTE: My research had made me more aware and confirmed my thinking. You are welcome to not agree with me but just think about this for a minute. Pain is a symptom. Pain can be caused by trauma, stress and inflammation and in MY case I knew it was all of the above. I was swollen in every muscle and joint of my body, especially my knees. I had grown accustom to thinking that Pain was a diagnosis like a headache or joint pain. I grew to believe that pain was an actual diagnosis that I could easily treat with a pain pill. But the truth was my pain was a symptom not a diagnosis and it was telling me that something deeper was wrong. As I look back, When I noticed I was taking more over the counter pain medications than I normally would, When I noticed the "Brain fog" memory -loss and shortness of my patience. The overwhelming exhaustion, loss of breath, my heart seemed like it was in overdrive. My inability to communicate. Random tears forming at the oddest moments. Everything that led me to believe I was just getting old. The truth was my pain was Physical, Emotional and Mental all rolled up in one body, MINE. My conclusion: Pain was a symptom, a response to something all that was happening in my body. I call this "Hiccups" or outside my body I call this "Speed bumps". I will explain this "personal thinking" in a future blog post. If I forget...You can remind me!
Let's continue... During this first visit with the doctor I shared my view about pain. So I hope you can all understand that although I know this physician was trying to help me and was following the protocols established by the governing authority of doctors and medical professionals. I became beyond upset when this doctor wrote me a prescription for an HIGH DOSE Opioid pain medication to assist my pain. (more details below) I just couldn't believe it. My thoughts.."We just took blood for testing and we have NO results and you want to give me pain relieving drugs as a first course of treatment?" WOW! "Plus, I had just told this doctor my feelings about drugs." "I don't have to wonder why there is an opioid addiction crisis in this country." Enough Said!
Needless to say, I refused the prescription and asked for something that was NOT an opioid.
The Blood results are back..
Thomas and I went back for the follow up visit. I was given a diagnosis and treatment plan that met my symptoms and matched the results from my blood tests. I will admit it...I had another stressful moment with this physician because I had returned to researching for the 3 days prior to this follow-up appointment. I looked up Cholesterol, Pre-Diabetes, Heart disease and Lyme. I looked up what potential treatments were for each and I noted side affects of each. I wanted to prepare myself for what treatment options may be offered once my blood-test results returned. I also found the following videos. I will share with you now. Please watch and then keep scrolling for my Blood Test results. 5 mins to watch both of these trailers. Graphic content
The Details: My blood work results indicated that I was
- Pre-Diabetic: (AC1 blood test) This made sense, my mom is diabetic. My treatment plan -change diet, -get more exercise. I was right on the cusp and if I altered things. I was told I may be able to hold off it off from being a full-blown diabetic for awhile.
- My heart was fine except for
- High LDL Cholesterol: My "bad" Cholesterol was high. This also made sense it was in my family. Suggested treatment plan. I was given a prescription for a "statin" drug to regulate my levels. I questioned the physician if I made the changes for diabetes would that change my cholesterol levels. She said it would help. Then, I told the doctor I didn't want to take these pills.
The doctors exact words. "You better get used to taking them because you will be on them for the rest of your life!" My response. "I don't think so!"
- Lyme Disease: I tested NEGATIVE FOR LYME because I did not meet CDC criteria. The bacteria was present but I DID NOT meet CDC requirements to receive a POSITIVE result. I was given a prescription for antibiotics. "Just Because" (Doxycycline)
I went home angry! I was misdiagnosed and down deep in my gut, I knew it. I chose not follow this first prescribed treatment plan except for taking the antibiotic and changing my eating habits. "Some people" have said I was stubborn and I should have trusted the doctor and that is "OK." I chose to follow my instinct and my weeks of researching for information. I had read horror stories that those "some people" with an opinion had not read. The people who thought I was nuts had no clue how I felt inside because outside I looked fine.. IF I had followed that very first diagnosis and treatment plan. I know, it would have made my health worse. The medications prescribed could have caused additional problems. Addiction and additional medical issues. If I had listened to others, well, I wouldn't be sharing this today. I could not rule out Lyme Disease so easily.
I just want to express my sincere empathy to those who are living with a chronic illness or depression or intense emotional or physical pain. I get it and feel it. I know there are so many others that still live in darkness so this is not just about Lyme Disease. This is truly about any illness and any form of hurt. I know how hard It is to acknowledge that something is wrong especially when you have been primarily healthy. It is even harder to admit it to yourself and seek help.
For those who struggle. I fell to my knees...
When doctors, medicine, and people let me down. I fell to my knees. EVERYTHING I owned and worked for in this life was slowly disappearing. My health was failing and my career, my vehicle, my savings were gone or depleted. I distanced myself from family and friends because I couldn't explain nor communicate. There were moments I wanted to give up! I was angry. I had awful headaches, nightmares and visions. I truly thought I was dying. I had to force myself to think about what I had, instead of all that I saw myself losing. I began to count my blessings. That was when God whispered in my ear "Resilience". I know it was him. I have prayed and read my bible or devotional everyday for most of my life. I thought about blaming him and for a time I did. But, I trusted him. He has always been there for me. While the rest of the world left me feeling hurt, lost, alone, confused and with no hope. I knew to open my bible and more often than not, I found peace. I made a commitment every evening to study. I thought it would take my mind off the pain and I could begin to regulate a sleeping pattern.
MY personal belief is Our God made this planet resilient and its supports itself, it heals itself, and we are part of this planet. I truly believe that because this bacteria came from a tick that is part of this planet. I could fight this illness in my body by supporting my body to do its job and supporting my immune system by removing chemicals from my home, my personal skincare products and eating organic or home-grown food, adding herbs, medicinal plants and adding movement and do things that kept my mind working. This became my treatment plan.
It started slow...I created a routine. I began waking up at 4:30-5:00 am and spending an hour sitting on the porch, watching the sunrise or designing and researching Lyme. I would take my self-prescribed medications, drink my tea, play with photoshop and illustrator creating designs and then put Jordyn on the bus at 7am. Those 2 hours became the best part of my day because after I had breakfast with Thomas, my body and mind drooped. I would become overcome with exhaustion and I would sleep till it was time to get jordyn from the bus at 4pm.
One Year Later 2015
I found a Lyme literate medical doctor. He complimented me on what I was already doing and we added oral antibiotics, and probiotics to my regimen. I accepted. He recognized my symptoms and ordered various blood tests including blood antibody screening tests this time from a lab that specializes in Tick Borne Diseases. When my test results came back positive. I cried. I was loaded with bacteria. The tests look for antibodies that our bodies create in defense of foreign intruders. All I can say is that my body was doing its job and working hard. At the time My doctor had many years treating patients specifically with Lyme and Tick-borne Diseases. By comparing my symptoms to my test results he clinically identified Lyme bacteria and 3-possibly 4 other bacteria and a parasite just from my symptoms and his experience. It was REAL and I was right. He wanted to install an IV port for antibiotics and I refused. I took my antibiotics orally and I promised him that if I did not improve than he and I would discuss this as an option. He and I chose my treatment plan a mix of traditional medicine and naturopathic protocol. I added to my journal...what I was eating... what I was introducing to my body and how I felt after. As time passed, I really got to know my body and how it responded to what I ingested. I introduced herbs and spices one at a time, most I ingested in the form of a tea, or spices added to my food. I added various vegetables that had the medicinal qualities, I introduced what I thought my body may have needed to support itself. I sourced the organically grown fresh & dried roots, flowers, stems instead of capsules. I tried to find all I needed from local sources. I was going to assist my body, support my immune system. It wasn't easy and I had no idea if it was going to work. I just knew that I did not want to be on various drugs that offered other side affects and potential complications. I strongly focuses on reducing my inflammation which in turn reduced my pain without any prescribed pain medications. This mind-set may be difficult for some to grasp. I remember when my body introduced me to the Jarish- Herxheimer reaction or "Herx" for short. Simply, This happens during "die off" of the bacteria or other toxins in the body. The "dead material" builds up and my body was trying to get rid of it. This pain actually became a "GOOD PAIN" it meant the antibiotics were working. My body was having a inflammatory response to the build up. I did not know it at the time. My "herx" presented itself primarily in my kidneys. I was in severe pain in my lower back. At first, I thought I had a kidney infection or problems from the antibiotics or my lower back hurt from sitting incorrectly at the computer.. I thought.."Was I taking enough probiotics?" When I learned about this Herx reaction and realized that maybe my kidneys were working hard to get rid of the dead bacteria. (REMEMBER ANTIBIOTICS kills of ALL bacteria especially in our guts.) then our bodies attempt to get rid of it through urine and other ways. I did an inventory of all I was taking, eating, drinking to see of anything could be causing this severe pain that made me walk slouched over. I decided that this was a "GOOD PAIN" and increased my fluids to assist with evacuating my now DEAD tenants. This worked. My pain subsided in a week or so.
A month after I started the antibiotic treatment and all of my lifestyle additions and subtractions.
I had my blood retested for Diabetes (ACI) and Cholesterol levels. The results: THEY HAD ALL IMPROVED! I WAS STILL NOT out of the woods but I was stable. Changing my eating habits had worked, introducing spices and herbs had worked. My immune system was supported and it was working.
Then I thought about the WHAT IF's ...What if I had taken that statin drug? What if I had taken the opioid? WHAT IF I didn't research? What if I did not say NO? What if ...after... what if flooded my brain. What IF I did not take a stand for my own well being? I mean I live with myself and this doctor didn't know me.
What if it was Jordyn and not me? What would I have done? I could not feel or understand her pain?
A darker "What if"... I had continued to develop my plan to kill myself?
As I think back to those days of research. Researching my symptoms and reading blogs written by people who were suffering with the same symptoms as I. The tears and unanswered questions. All the different treatments people were trying. All I feel is sadness. intense sadness because I know there are others struggling. THEY MAY BE UNAWARE THAT THEY MAY HAVE OTHER CHOICES. They are taking doctor prescribed medications and still feel sick. They feel rejected and misunderstood. I had a physician say "It is all in your head" I had one tell me early on that a couple weeks of antibiotics and it will be fixed. Some peple are not getting better. They may have been misdiagnosed by a medical doctor that was following established medical protocols for diagnosis. LIKE I WAS? or received a negative Lyme test or this or that. The list is endless. I cry for those who are in pain or struggling with the symptoms I vividly remember experiencing. I remember the days I wanted to give up. I felt alone in my illness, I lost friendships. I remember thinking about suicide and beginning my planning. I write my words on this page for you! Please don't give up! You have choices. You can make changes and listen to your body. I know that we are all wired differently. Yes, it will take time but WHAT IF?
I know that what works for one may not work for another. I know and I understand! Please consider options. Look for them. Listen to your instinct, gut, intuition, your body. Ask someone to look. Resources and Lyme-Literate doctors are confusing but they are there. I will share my growing pile of papers and books and research. I will only share what I applied. Its up to you to decide what is right for you. ALWAYS REMEMBER....I AM NOT A DOCTOR,
History of Lyme
My research has led me to various theories about the origins of Lyme. So the full "History of Lyme" is open to speculation. This disease seems to have been packaged in one word. "Lyme" named after a town in Connecticut. Lyme is associated with Borrelia burgdorferi which is ONE bacteria. Source: A Brief History of Lyme Disease in Connecticut There are others that believe Lyme was lab created on a neighboring island off the coast of Lyme, Connecticut. and others who believe that this bacteria has been around for many, many years.
I am not prepared to include sources for those statements. I will update this ASAP. I intend to write about each theory in my Blog-Journal.
There are MANY types of Tick-borne diseases and insect borne diseases and still more being discovered all the time.
The associated bacteria of each tick- borne disease mimics other illnesses. Each could be transferred in one tick bite. EACH bacteria creating its own "symptom" causing its own chaos in our bodies. (I share a list of some below) Those symptoms can be associated with other medical issues that is why humans may get misdiagnosed. They are "The great imitators." They imitate other illnesses. Source: Tick-Borne Disease of the United States
If you have any of the symptoms listed at the end of this page. Ask your doctor to attempt to Rule out Lyme, Co Infections and other Tick-Borne Diseases..I believe that ruling out before treatment is standard protocol. I know this is difficult. At the time of this writing, It is May 2018 and the medical community is still searching for efficient and effective ways to test, diagnose and treat people. Creating conflict between medical providers and confusion for us the people who are ill.
The National Institutes of Health (NIH) has funded several studies on the treatment of Lyme disease that show most people recover when treated within a few weeks of antibiotics taken by mouth. In a small percentage of cases, symptoms such as fatigue (being tired) and muscle aches can last for more than 6 months. This condition is known as “Post-treatment Lyme Disease Syndrome” (PTLDS), although it is often called “chronic Lyme disease.” For details on research into “chronic Lyme disease” and long-term treatment trials sponsored by NIH, visit the visit the National Institutes of Health Lyme Disease web site. SOURCE: cdc.gov.
Are you confused? Well so am I...
Really, Its is May 2018 and since the more excepted theory, The history of Lyme disease in Connecticut began in 1975 various people, physicians, associations and groups within and outside the medical community are all still searching for efficient and effective ways to test, diagnose and treat people. This mass amounts of research is what I believe to be creating conflict between medical providers and confusion for us the people who are ill. I have created an addition page about the conflict and confusion and resources concerning this disease. Get a cup of coffee I have included a lot of information....I had to create a whole entire additional page about the conflict confusion and other resources concerning this disease.
Before you go there....
The words of Dr. Burgdorfer.. THIS AMAZES ME, Watch it before it disappears....I often wondered..
Why do blood test results come back negetive?
This excerpt from an interview was not published until after Dr. Willy Burgdorfer, Ph.D passed away on November 17, 2014 (Published on Nov 18, 2014) That IS...Just another interesting discovery I found during my research for answers. Dr. Burgdorfer is credited for discovering the corkscrew-shaped bacterium called Borrelia burgdorferi. The primary bacteria associated with Lyme Disease. Dr. Burgdorfer's death on November 17, 2014 leaves behind many unanswered questions.
I am done..for now! If you have read this far I commend you and Thank You for caring! - Sharon
My special Thank You's and MORE resources for you!
- Dr. Richard Horowitz Author of "Why Can't I get better?" and How Can I get Better? Why can't I get Better was the first book I read that made any sense. Thank You... for writing this book.
- His blog posts are very informative
- **Note** Dr. Horowitz practices at his clinic the Hudson Valley, New York State. I found this knowledge to be a "WOW" moment.. because I was born and raised not far up the road from his office.
- Dr. Horowitz includes
- Stephen Harrod Buhner It is to important to note Stephen Buhner is not a medical doctor. Yet, his books and insight about Lyme and Co infections have become my PRIMARY "go to" resource. I have developed a new love for plants and their medicinal qualities and offerings.
- Dr. Horowitz and Dr. Daniel Cameron They are only two of the founding organizers of the International Lyme and Associated Diseases Society ILADS.
- Thank you Dr. Cameron. I had the pleasure to have a chance encounter at a local restaurant when he had stopped for a meal. Dr. Cameron had spoken at the Susquehanna County Task Force Event held in Montrose, Pa. It was a beautiful moment when you invited me to sit and chat with you. You didn't have too. We may not have agreed on various things concerning this disease and our belief systems did not match entirely. But, you were willing to listen and your dedication to helping others made me feel honored and humbled to have met you. You were an inspiration for me. I kept digging, learning and finding what worked for me.
- To my personal Lyme-Literate Doc. My words can not express the gratitude I have for your dedication to me and others.
The names listed above are the primary sources I have used to create my own way to healing or what I call my "maintaining life" plan. There are others that I met via my google searches, Lyme related events and other events, workshops etc. People who cared enough to share, write a book or were looking for help. I am organizing them and asking permission to share their story. **This page is currently under construction***
If you think you have Lyme or are looking for more resources. I AM NOT A DOCTOR>> But ..I AM A SURVIVOR-IST! I will do my best to direct you. I am considering re-starting a newsletter or creating a group platform and sharing more about how I maintain life with Lyme, recipes, sources, inspiration. etc. I tried this in the past and failed. I couldn't think and my words seemed angry all the time. I am willing to try again if your interested in connecting, send me a note, or ask a question.
Thanks for reading -Sharon