• Tag Archives LLMD
  • The Denial & Ignorance of Lyme Disease

    By Laura D. Field of Potpourri of Health – May 17, 2017

    Yesterday I listened to a 30 minute telecast from one of the local hospitals. It was discouraging to watch and listen, as the conversation was neglect of what needs to be shared.

    The main focus was to discuss how worried one should be about tick-borne diseases and how to prevent tick bites. I was interested in listening; as I was hopeful that possibly the hospital might have gained a new perspective and understanding of the disease. And yet, what was shared was extremely limited and not fully transparent.

    People are looking for answers for their symptoms. When tests come back time and time again that “you are fine”, while brushing you off until your next persistent push to find an answer. Recommendations to see specialists, such as neurologists, rheumatologists, pulmonary and heart specialists, that you become tired of becoming the victim of “nothing is wrong” when you know without a doubt there is something brewing within your body.

    For myself, it was to the point where I literally felt as though I was being eaten from the inside out. Internally it felt like bugs were crawling within me without the ability to physically remove (kill) them. I was dizzy and had to stop walking outdoors, had forgetful moments NOT related to aging, brain fog where I simply struggled in finding the right words, pain throughout my joints and muscles, tremors, increased anxiety, increased blood pressure, lack of desire, ambition and strength, chronic fatigue, etc. The list was endless.

    My primary physician started to push Fibromyalgia, which I shared that it was not “in my head” or related to past trauma. This was real. I had MRI’s and x-rays confirming that I had arthritis and some Orthopaedic issues. My Orthopedist also confirmed that it was NOT fibromyalgia. Then off to the Neurologist, due to a brain scan showing signs of MS, but unless I chose the spinal fluid test, they would not know for certain. This was something I had refused because I have back issues and had recently undergone back surgery for sciatic pain that was extremely disabling.

    I finally gave up until I met with my specialist for another purpose, and as I shared a few of the symptoms I was struggling with in relation to my purpose there, he started to review the multiple tests that I had gone through. He then asked me to keep talking while sharing what I had become tired of sharing. I asked him “why”, as I had pretty much given up and believed that it was no longer worth the struggle in sharing what I was going through. It was easier to accept that my body was dying and I was making plans to simply accept that fate.

    So, after listening, he said, “I think I know what is going on”. I perked up a little and asked “really??” Then he shared “I think you have Lyme Disease” I shared with him that I was tested a few times at the hospital and he said, “although it can sometimes show a positive result, more often than not it doesn’t. I need you to consider another test, that unfortunately is not covered by the insurance company”

    My husband and I went home with something to think about. I researched a little about Lyme disease, read some literature he gave me, and I perked up with encouragement, sharing with my husband that Dr. D. could be right.

    Now, I’m not one to look for an ailment, just answers, so that I can make changes to improve if necessary. But what I read was eye opening. Despite the pinch in our resources, we were fortunately blessed with the funds, to have the $200 test done. There was a part of me that expected that the results would come back “normal”, a part of me that really wanted it to come back normal, but my hope was that I would have an answer.

    It wasn’t even two weeks when I heard back from my physician sharing that I was positive and needed to see me back in his office as soon as he had an opening to fit me in, which I was fortunate in that I was able to acquire an appointment two weeks later. In the meantime, he gave me more resources to read, so I was at the library acquiring the books he recommended.

    I am an avid reader, always desiring to learn what I can, along with reading for pleasure, but the task to read at this stage, was a chore. I read though. I read a lot!! So, by the time I entered his office, I said, “well, I don’t plan on living in a 6 story high-rise apartment, as I love being out in nature, but I am willing to fight”

    That was 2 ½ years ago, with a diagnosis at that time of at least 8 years of having the disease, and going untreated. Treatment is a roller coaster ride of getting better then feeling worse, then returning to feeling somewhat better again.

    The reason the online telecast was discouraging, is that they avoided the topic of the real danger Lyme disease. They stated that it could be healed, which it cannot, although it can go into remission. Most patients, even if they say they are healed, they are on an ongoing treatment of antibiotics, antibiotics and herbals, herbals and tinctures, essential oils, diet, or other option that allows them to function. Let’s be real; if you are healed, you no longer need an ongoing treatment plan to keep symptoms at bay. With Lyme disease, once you are back to a “normal” life, you still run the risk of symptoms returning. Think of Chickenpox. You acquire the disease as a child, yet that virus remains in your body and can come back as Shingles. With Lyme, we are talking about a bacteria that has co-infections and screw-type bacteria (spirochetes) type bugs that find places to bore themselves into, hiding away while at the same time multiplying.

    The Infectious Disease specialist called it Post-treatment Lyme; where you deal with symptoms after initial treatment, yet do not have the disease. What is the answer to the patient who has suffered with Lyme disease for years, before they are appropriately tested and finally considered infected? This is NOT post-treatment. I was diagnosed with Chronic Persistent Lyme disease, with test results that fell within the CDC guidelines. “Post-treatment” they claim is the residual recurrence and long lasting “symptoms” but not the disease.

    What was interesting is that she shared that you will always test positive for Lyme after your initial diagnosis and treatment but you will not have Lyme disease again. REALLY? So, a cancer patient has tests proving they have cancer, obtain treatment to which they heal and go into remission. They are considered cancer free.

    Until the CDC “says” something is real, it is not real in the eyes of physician acceptance with treatment. Yet even with the CDC levels showing a positive test result, my PCP continually denied/denies that I have this disease. Only those who research and study, with a desire to treat their patients based on believing what they are told, while providing them a test to aid in their treatment plan, will be the leaders in helping Lyme patients heal. Unfortunately, this results in very few specialists (in this case LLMD’s – Lyme Literate Medical Doctors), who are willing to treat a population that is steadily growing with very sick people.

    My next blog post I will share the topic of prevention and what one can do. The telecast did share some tips, but there are more to which I believe might prove to be resourceful.

    Be careful of the crawlies…they are everywhere and when you least expect it, you could have a hitch-hiker looking for a place to nestle and bore into.

    Laura

    Laura D. Field – Blogger and paid Freelance writer

    Potpourri of Health www.potpourriofhealth.com
    Freelance writer at www.reflectivetapestryoflife.com
    Seamstress consultant at www.davinadawnsewing.com & www.seamstobeme.davinadawnsewing.com


  • Lyme Disease and Treatment

    freedom from illness

    Lyme Disease and Treatment

    By Laura D. Field of Potpourri of Health – May 4, 2016

    By now, you have heard about Lyme disease, yet might be confused about all the various treatments of the disease. The reason for the variation in how it is treated, along with the confusion of why there are so many methods. Lyme disease itself is a conglomerate of multiple bacterial bugs that drill themselves into hiding, while multiplying and changing as they become accustom to the host (the person or animal who is infected). To treat Lyme disease, the physician needs to truly understand the chemical and biological changes that the person has endured. This is not an easy task, as each person is different, as is their immune system, physical health, unknown longevity of the disease, and what symptoms they are experiencing.

    You might not even realize you have Lyme disease, yet if you have an infection (not Lyme related, such as a UTI) in which your physician prescribes a short course antibiotic for, the Lyme bacteria responds to that treatment in an effort to protect itself from being killed off. Sure, you might have resolved the infection for which you were being treated for; yet, you have also created a whirlwind within, similar to that of a bee hive being disrupted, as the spirochetes are also being ambushed by the antibiotics. They are literally not happy and will respond in kind, resulting in symptoms you least expected.

    Other things that can disrupt the hidden cycle of spirochetes are that of herbals and oils that might have an anti-microbial and antibiotic component to them. Surgeries can disrupt their nesting, as can steroids. It is not to say these positive health options should be avoided when needed, but in my situation, it was as if a fire pit was stirred resulting in a very different response to healing than I once experienced.

    I personally believe, with the guidance of my LLMD along with my research and medical knowledge, that the bacteria caused by the ticks and other forms of invasion into our bodies, we need antibiotics to kill the bugs that mass produce, which create co-infections that affect ones quality of life. For some individuals a short-lived antibiotic course of treatment is appropriate, yet for others, it is the complete opposite.

    Lyme Disease is simply a horrible and life changing disease. It affects everyone differently, regardless of how healthy you might consider yourself to be. You can have a great immune system, yet the moment your system in compromised, the lovely little spirochetes come out of hiding and begin attacking. Where once you had energy and strength, you discover the life altering weakness that becomes a part of your life.

    I personally support both antibiotic and herbal tinctures for treating Lyme disease. I also believe that herbals and essential oils, along with exercise and a clean diet play an intricate part in everyday health and in supporting our overall health and any life altering symptoms. For myself, to date, I have had 17 months of antibiotic treatment. Around 6 months in, I started adding additional essential oils to help with some symptoms, and more recently some herbal tinctures combined with antibiotic care. All of this has been done with physician support along with his knowledge of what I was doing, although not all prescribed.

    Fortunately for me, I have a fabulous LLMD (Lyme Literate Medical Doctor) who has first hand knowledge of this disease and what it can do to a person. It creeps up on you, and all of a sudden you are wondering what the hell ever happened to your vitality of life. The symptoms vary from person to person, with various levels of tolerance. For most, it simply wipes you out and causes extreme pain, weakness, and chronic fatigue, along with a vast variety of other symptoms.

    My list was endless, causing me extreme frustration. My primary care provider and other specialists she sent me to, had me endure various tests with no “real” answers, proving that I was completely healthy, while making me feel as though I was wasting my time looking for answers. The best that they could do was to prescribe pain meds along and other medications (“let’s try this to see if this helps”), yet I refused to take a pharmaceutical remedy without having an answer, so I was seen as a non-compliant patient.

    I finally gave up and accepted that this was my life while accepting that I was simply getting old. I contributed my joint pain to the osteoarthritis and some tears, while the other symptoms I simply could not understand.

    While I was visiting my specialist for another reason, he noticed all the tests that were done on my medical record and asked about my symptoms. As I shared my extensive list of symptoms, he patiently listened and knew what was going on, yet needed for me to confirm his suspicion. I did the IGenix test (very different from the generic test done at the hospitals), which cost me $200 out of pocket with no insurance reimbursement. Within a few weeks the answer arrived guiding my LLMD to choose which treatment I should start on. When my LLMD finally diagnosed me with Chronic Persistent Lyme Disease (an estimate of over 8 years of being undiagnosed with compounding symptoms while the spirochetes multiplied, causing the symptoms to intensify), I was ecstatic. “Finally!! An answer!!” yet this excited relief only lasted for a day. I read the recommended books and literature. The defeat I felt left me crying for days, which was quite unusual for me.

    As I returned to my LLMD to discuss treatment options, I literally cried. I was extremely fatigued, my body was in constant pain and weak, the brain fog was beyond comprehension, my equilibrium was off, and my body felt as though I was being eaten from the inside out. I honestly felt like I was dying. The reality of what was happening to my energy, strength and focus in life turned to frustrating anger. I was literally ticked off.

    Despite the challenges that faced me, I saw that I was quite fortunate in having a LLMD willing to guide me (who told me that I was NOT old), along with a husband who has been supportive beyond what many others experience. I also have the personal drive to maintain a healthy lifestyle, which meant healthy clean living along with daily exercise, regardless of my energy levels continued to be essential.

    Not only is Lyme disease controversial, so are the treatment options. Some support the antibiotic approach of killing off the many bugs that continually multiply; some choose strictly herbals, tinctures and/or essential oils. Personally, despite the controversy, I believe that antibiotics have their place and serve patients best, then as the course of treatment continues and symptoms improve, add in herbals and tinctures.

    In all honesty, I fought using antibiotics and whole heartedly wanted to be treated completely holistically, yet I also knew how sick I had become and I wanted to be well, so I listened intently to what my LLMD shared. With medical courses and healthcare work behind me, what he shared made complete sense to me, although I was apprehensive in supporting Big Pharma with their overpriced options that produced allergic responses and horrible side effects.

    I am currently now pulsing with antibiotics combined with herbal tinctures. In addition I use LLMD supported supplements, with my ability to use the essential oils I see fit. I continue daily detox baths, and my husband provides daily massages each evening to reduce the pain elements of this disease. So far things are going “okay” with pulsing. The non-stop ear ringing, headaches, and a few other symptoms are returning, which I have experienced as a result of when we change treatment. I have also learned to ride the roller coaster of Lyme disease with grace, although there are days that have proven to be a little more challenging than others. Those are the days I look at my husband and ask him “Am I a little cranky today?” I love his honesty in sharing that maybe it is more than “a little” yet he never complains. He has shared that he can always tell when the disease is taking over, as it affects my response to circumstances that would otherwise not bother me.

    When out and about, no one really knows you are ill, hence the “invisible illness” label. You make light of your disease, because if you are asked to explain, it would not only be exhausting for yourself, but others would begin to seek the nearest exit sign. Most of those who become ill, and have enjoyed a life of self-sufficiency and pride, are not seeking sympathy or attention, and desire to be a full participant at work and social events. Their pride causes them to hide from the shame that society has cast on those who are weak. Those with Lyme disease simply want to be understood, helped without making them feel inadequate, and enjoy conversations that do not revolve around their disease.

    My pride was shattered, something I continue to struggle with, resulting in my going to my appointments trying to be positive and not really sharing “everything”. It was my way of trying to overcome a negative with a positive. Yet the day my LLMD noticed the tremors in my hands, he reminded me that in order for him to help, I had to be totally honest with him in reference to my symptoms.

    This is the reason that treatments vary from patient to patient. It is essential for one to have a LLMD or LLND who takes the time to listen while observing what is physically happening during ones appointment time, as well as pertinent questions. By their ability to show compassion with great listening skills, they can then analyze and decide which co-infection to go after in ones course of treatment.

    Lyme Disease really sucks!! The bad days make you feel defeated, yet the good days make one feel like they can conquer this twisting mountain. Eventually, you adapt to the roller-coaster ride of healing, and create the internal determination that you will get through this. But more importantly, you discover how vitally important it is to be caring and loving to oneself. If your body requires a nap, you make time for that nap. If you need a break in life, you take that break. Eventually you find that peaceful balance that is required for healing.

    I have no idea why God has allowed my body to go through this challenge. But I do believe His purpose will eventually be revealed.

    “May compassion be your strength and love be your sword” – Laura D. Field

    Laura – Blogger and paid Freelance writer

    Potpourri of Health www.potpourriofhealth.com
    Freelance writer at www.reflectivetapestryoflife.com
    Seamstress consultant at www.davinadawnsewing.com


  • Lyme Disease? It Couldn’t Be!! Or Could It??

    tick picAfter a number of years of complaining to my physicians about pain, migraines, breathing difficulty, and various neurological concerns I finally got to the point where I simply decided it was time to accept my age. I could no longer pretend to be 26 when my body was 54. Oh well, David and I just found ways to humor the situation. He became my strength when my body and mind were weak. I became quite good at hiding how I was really feeling to others.

    In addition, I had MRI’s showing tears in joints and lower back issues. I simply had an answer for most of the pain. The forgetfulness, well our girls found it to be hysterical, although at times annoying. I quickly adapted to writing notes and lists in order to not forget. My passion for sewing for others was quickly coming to an end, when I realized how tired I would be the moment the client would leave.

    So, as I sat in my specialists office, reviewing my compound hormone therapy and chronic pain issues, he was at the same time reviewing many of the tests that I had done with my PCP and specialists that I had seen. After asking various questions, he shared that although he was not 100% certain, he was quite confident that I had Lyme disease.

    Well, that was one thing to make me stop mid-sentence. Lyme had never crossed my mind. Plus, the neurologist tested me for this, twice!! And I never had the classic tell-tale signs of being bitten by a tick. Being a Lyme specialist and having had Lyme himself, he requested that I take a test that was not covered by the insurance, through IGenix, meaning I would need to find $200 to send with the blood work. Within a week, the test was done, and I was in the “wait” mode, yet not really all that concerned. I honestly thought that everything would return normal and I would continue on, accepting there was no real explanation, and continue to do my best in maintaining a healthy lifestyle.

    A month had not even passed when I received a message from my LLMD that I indeed had Lyme and that I needed to see him as soon as possible to start treatment. In addition, I was asked to read “Cure Unknown” by Pamela Weintraub, watch the video “Under Our Skin” as well as check out the web-site www.ilads.org to start obtaining some information.

    By the time I arrived in his office, I was overrun with guilt in not knowing or even thinking it could be Lyme,  and feeling frustrated that specialists were not able to provide answers or relief because they did not know. Prior to arriving at my appointment to discuss and start treatment, I read his recommended sources as well as all the books I could find at our local library. I reviewed the list of potential symptoms and made a list of what I experienced everyday of my life. After all the reading I had done, and listing out the symptoms, I looked over at my husband and shared with him how surreal this was.

    tick picThere is no doubt, that to receive the news that I indeed had Chronic Persistent Lyme disease for about 7 – 8 years, was overwhelming. The Western blot testing even proved to be positive by the CDC’s standards. Despite my delight in having an answer, I was equally scared of what I now had to face. I was hopeful that treatment could be done naturally, but as it was further explained, the disease is a bacteria that grows within our body, and finds places to hide. The antibiotics were necessary to kill the bacteria and needed to be changed in order to attack them effectively.

    Treatment provides no promise of eradicating the disease within the body. What it will do, however, is kill off most of the bacteria (although we hope that it will kill all of it), and reduce the symptoms it has caused.

    In addition, the Lyme bacterium affects every person differently. Some have mild symptoms, while others have such a list that it makes them completely disabled. What many outsiders do not understand is that although we might look normal and healthy on the outside, our bodies are screaming from within due to the various symptoms we face.

    What About Nutrition:

    Although my LLMD (Lyme Literate Medical Doctor) is not stringent on the need to avoid particular foods, he does recommend limiting the foods that can complicate the healing. So, with already have a gluten, milk and egg free diet, and a reduction in processed sugars (which I had already started a few months earlier), I could basically continue to eat the way I had been doing. All that was requested is that if I craved the sugary treats, to limit them as he wanted me to push the fruits and vegetables.

    In addition to the antibiotics and ointments, I consume 2500-3000 cc of water a day, 4-8 oz. of Kombucha, and 2-4 oz. of Kefir, along with a high concentrate of probiotics. This is all in an effort to flush out toxins and keep yeast at bay. I also take a few supplements, such as Vit D3, Vit C, Fish oils, Vit B12, Biotin, DIM, turmeric, and Serene with Theanine.

    Lyme might have the ability to weaken my body, but I will fight that it not weaken my spirit.

    For those who have Lyme, I understand and pray for each of us daily. For those who do not understand this disease, I ask that you not judge what you do not understand. In all diseases and disabilities, compassion is what makes our society strong.

    Peace and Faith,

    Laura

    www.potpourriofhealth.com

    www.reflectivetapestryoflife.com

    www.davinadawnsewing.com