Hesitantly, I walked into the Lyme Literate Doctor’s office May 27th, 2016. From 2000-2016, I had been seeing 17 different doctors, including a trip to the Cleveland Clinic to see a cardio-pulmonist. The spring of 1980 was really when it all began, this mysterious health fiasco. It started out with flu like symptoms that caused me to end up in the hospital with jaundice, 20 pound weight loss (I left the hospital weighing a mere 98 pounds) and dehydration. After spending a few days on IV fluids and antibiotics, I was release and I was told had some sort of infection. I went home to recover only I didn’t really ever totally recovered. A week following my hospital stay, I developed massive black and blue lines across both my legs, some bruises on my arms, fatigue and flares of anxiety. Time went on and I improved, but I never fully recovered. Over the course of many, many years, symptoms would come and go. Sometimes I would be feeling pretty fine. When symptoms returned they would be different in intensity. Some symptoms would be new, some old, and some went away and never returned while others came and never left. In the early 1980’s I had a lot of Deja Vu experiences, and a weird feeling like I wasn’t “there” but I was. As the years went by, I had two children while symptoms continued interfering with my life. The fatigue, inability to exercise, shortness of breath, chest pain, muscle weakness, heart palpitations that sometimes were like thumps and vibrations as well as skipped beats made life difficult. I was tested for Epstien-Barr Virus and found I had the highest titer possible for antibodies. My doctor at the time explained that the “type” of EBV I had would be chronic, and would cause flares because my immune system was weakened by it. For a long time I got relief from a good multi vitamin and Ultra B Complex. By time 2000 rolled around I began having rashes and swellings. Most looked like allergic reactions, but some were circular, and they would appear, then disappear minutes or seconds later. Sometimes they would burn, sometimes severely itch. I had swellings around various joints, that would come and go, and often times my fingers swelled especially if I walked for exercise. My GI tract put me through bouts of constipation alternating with bloody diarrhea, landing me in the ER more times than I can remember. I was always bloated, nauseated, eating bothered my stomach, sometimes causing an “attack” that would send me running to the bathroom with diarrhea and vomiting at the same time, heart rate skyrocketing with drenching sweats and even collapsing. I would be put on Flagyl and oddly, every one of my symptoms would disappear and I would feel great. Within a few short months symptoms would return and I’d be back to square one or worse. When the attacks weren’t GI related, they would appear suddenly and severe. Some attacks were flu like symptoms with lung pain, pain in the muscles between my ribs, extreme weakness, and sudden 5-10 pound weight losses that sometimes also sent me to the ER. I would be given Predisone and Tylenol with Codeine and sent home. I would improve, but eventually another flare would send me right back to the doctor or ER.
Enter September in the year of 2008. Many times I tried to simply walk for “exercise” but my torso would feel as if it were turning to cement as I walked. I felt like I wasn’t getting enough air, though my oxygen level didn’t really drop. When I walked, my legs felt like they weighed a ton and it felt like tiny vibrators were pulsating in them with tiny shock sensations. Within the muscles of my thighs, extremely painful cysts began forming and even the slightest touch was very painful to the point where even wearing clothes hurt. Visible cysts formed on my finger and toe which weren’t painful, just ugly. I began to experience short term memory loss, difficulty thinking about things that weren’t simple, inability to concentrate, and trouble finding the right words in sentences while talking with people. Sometimes I knew the right words but the wrong words would come out of my mouth instead. Lights bothered my eyes, sound bothered my ears. The loud ringing in my ears made it hard to hear. Eventually I slept most the day and night, couldn’t stand at the sink to do dishes or at the stove to cook because my heart rate would shoot up to 145 just walking from the couch to the kitchen. Standing made me feel like I would pass out. I had a “twanging” in my head that sent pain down my neck and spine, heard what sounded like a door slam inside my head and felt popping sensations. I choked on my spit, food, drinks, my skin would itch like crazy my muscles would twitch, my legs felt like vibrators were in the muscles, or sometimes like tiny electric shocks were shocking my tissues. Sometimes my brain would suddenly feel novocain-like, making me stumble to one side, then instantly it would stop and I’d be fine again. I was stiff whenever I stood, or sat up from sitting, my bones hurt, my heart hurt, the pain in my body would “travel” from one place to another off and on through the day or week. The bottoms of my feet either would burn or tingle as did my hands. I would be so cold, then break out in a drenching sweat, a sweat so bad during that during the night my side of the bed would be wet when I got up. I was moody, and easily irritated. I had tons of floaters in my eyes, they watered a lot, sometimes the area around my eyes would swell, and I had flashing lights. When I’d get new glasses, I would see fine through them, then not, then fine again. The fatigue was constant, extreme and I had no stamina. Dragging the trash down the driveway took everything out of me, with two stops to catch my breath on the way. My glands hurt and sometimes would swell for no reason. Sugar would send me into a deep sleep. The pain throughout my entire body was traveling pain. In the morning I would get out of bed and my leg would hurt. By time afternoon came, my leg wouldn’t hurt anymore but my arm would. Sometimes it felt like I sprained muscles. (Key point to all these symptoms is that, in Lyme Disease, ALL THESE SYMPTOMS WOULD COME AND GO, PAIN MOVED FROM HOUR TO HOUR FROM ONE PLACE TO THE OTHER).
By 2015 I was diagnosed with and treated for the following and with the exception of surgery for my thyroid and eyes, I had no improvements :
Pulmonary Hypertension due to Left side Heart Failure, Thyroid disease, Closed Angle Glaucoma (had surgery for that and it was “cured”) Esophagus mobility problems, pre Scleroderma, GERD, Laryngopharyngeal Reflux, Ulcerative Colitis, Crohn’s, Pancreatitis, Asthma, Mixed Connective Tissue Disease, Raynaud’s, Costochondritis, pre-Diabetis, Tricuspid Insufficiency, Fibromyalgia, Electrical system malfunctioning of the heart, Epstein Barr Virus, Cytomeglaavirus, and Pleurisy.
I took an array of meds three times a day with no relief from my symptoms for those things. My Blood Pressure was high no matter what bp meds I took. My heart rate was all over the place no matter what I did. The palpatations/thumpings/irregular beats often took my breath away. Cardiologists said these symptoms were due to misfiring of the electronic signals within my heart but the medicines did little to relive or regulate heart symptoms.
Back in 2007 I noticed this tiny “scab” on my forearm. I picked it off and the little red spot grew into a small odd circle that looked like a round bruise (picture shown below). I took a picture of it because in years earlier, rashes were coming and going and I never had proof of them until I began taking pictures of them, and also of the swellings I was getting. The pictures were proof I could provide of the rashes and swellings when I went to the various doctors if they weren’t present at the time of my appointments.
Before this tick bite, I had many rashes, bruisings and swellings that continued to get more frequent and worse after finding this “scab” and removing it. It would be a few years before I realized it was a tick and not a scab. It would be many years before I found the root cause to all my symptoms, a name for my mysterious illnesses, and relief. Here are what my bruisings, rashes and swellings looked like.
In 2008 my health began failing at a steady, albeit, slow decline. I tried a few part time jobs but wasn’t able to work. The two or three days a week I worked sent me to bed for the rest of the week to recover. The steady decline in health meant I spent most days laying down because the incredible fatigue and other symptoms wouldn’t allow for much else.
I met a friend in 2014 who had similar symptoms to mine and she also suffered many years. By the time I met her I had realized that for every symptom I had, I was prescribed a medicine to treat it. I remember sitting in my primary doctors office after an Emergency Room stay. We had talked about what happened, the countless symptoms I was having, the meds I was on and how nothing was improving. I began crying and told him, “I know I LOOK fine, but I’m NOT fine. I am dying and no one can find out WHY. I’m being treated for symptoms but no one can find out WHY I have the symptoms in the first place. No one is looking for the ROOT CAUSE of everything and I’m so frustrated.”
The friend I met was urged by someone to see a Lyme Literate Doctor. She went and was diagnosed with Lyme and four Co-infections. She urged me to go and get tested. She explained tests are very inaccurate, that the “traveling pain” I was experiencing, and the fact that when I was put on Flagyl my entire list of symptoms disappeared, then reappear after treatment stopped, could mean I had Lyme Disease. I went to back my primary care doctor, showed him the picture of my odd circular rash. He said it looked more like a bruise than the typical bullseye but agreed to test me anyway. I asked for him to do a specific type of Lyme test and he did. It came back positive for one of the Lyme bacteria but was considered “negative” according to the 20 year old outdated CDC protocol. I recalled having two other tests for Lyme between 1982 and 2007, but didn’t have the records of those results. (Always be sure to get and keep test results and doctor reports in a file) Quite honestly, it was probably also considered negative.
I had given up so many times trying to figure it all out only to start fighting for answers again when ending up in the ER. Leaving without any answers, receiving only pain meds and/or antibiotics, and/or steriods for whatever symptom groups flared up at the time left me with little hope of ever finding out what was CAUSING these problems. I was seeing two cardiologists, a pulmonist, a Rheumatologist, and GI doctor, and my primary doctor every three months, or more if I wasn’t “well”.
By time I saw the Lyme Literate doctor, May 27th, 2016, I was “spent”. It took me months to find the courage to try one more doctor. But, I had nothing left to loose. By that time, I was unable to drive by myself any further than fifteen minutes away because the fatigue was unbearable. I couldn’t function through stores mentally or physically, let alone stand in line long enough to pay for merchandise. I had a handicap parking placard that was a God-send for when my husband took me anywhere. (Side note here ~ Our insurance covered the doctor visit at the time because he accepted insurance. The testing was out of pocket, and the insurance covered a good portion of my prescription meds that my Lyme Literate doctor prescribed. That is no longer the case. And many patients don’t get help because insurance companies refuse to cover Lyme/Co-infection doctor’s appointments and meds needed to get them well.)
Imagine my shock when, within minutes of my first Lyme Doctor appointment, (filling out all the forms and symptoms checklist, of the over 130 symptoms, I had 103 of them) I was clinically (where they do a full body assessment via poking and prodding) diagnosed with Lyme Disease, Babesia, Bartonella, POTS, and possible Ehrliciosis. My Lyme Literate doctor explained the source of all my symptoms and which disease was causing which symptoms. He told me how he was going to treat me and gave me hope that I would improve within time. He also explained how the first month or two would be horrible because I had chronic to late stage Lyme, treatment is a rough road and once you being treatment as the bacteria dies off your body fills with toxicity that needs to be removed through “waste” (pooping and peeing). Because of the many years the bacteria had to burrow into my body, it would take a while to kill them off. His exam showed clearly that all my organs (including my brain) with the exception of my pancreas were inflamed and infected, my muscles and nerves were affected as well as my connective tissue. It all made sense at that first appointment. So, because of my history, and what his clinical test showed, he didn’t wait for blood test results to return. He started me immediately on a list of various antibiotics and anti malarial drugs specific for each disease, herbals to get and a hope for recovery. He drew blood for testing at a well known lab called Igenix out in California and when the lab work returned, it showed “negative” also but the same Lyme bacteria that was positive on my other tests was positive on this one also. Testing for Lyme is less than 50% accurate, (inaccuracies are noted as a warning on the actual test result pages when the doctors get them back). Most doctors will simply tell you it’s not Lyme and send you on your way. A Lyme Literate doctor will know for sure if it is Lyme AND/OR Co-infections or not and treat you properly. With over 300 Co-infections, you might actually test negative for Lyme but have one or more Co-infections. You may test positive for Lyme, be treated but your old symptoms, or new symptoms, might show up later on in life. The reason is, either you weren’t originally treated properly or you may have had one or more Co-infections that went undiagnosed. (as many patients do)
Here’s pretty much what all my Lyme and Co-infection meds looked like, minus the injections of B-12 as I began my first year of treatments. I followed my Lyme Literate doctor’s recommendations to the tee and within three months I went from 25-30% ability to function mentally and physically to 80-85% AND SYMPTOM FREE!!!!! I couldn’t believe it!!
Since being properly diagnosed and properly treated, I have done very well. I began treatment by cleaning up my diet, which required refraining from pasta’s, breads, carby foods, yeast, alcohol, diet soda’s and foods (especially nutrasweet products), and processed foods. I began eating mostly low sugar fruits (apples, oranges mostly) and all vegetables, very little red meat but every other meat and as much fish as I wanted. During the first four days of beginning a new eating strategy, I also began taking a potent probiotic capsule along with some herbal tinctures of Silver Shield, Teasel Root, Milk Thistle, and Liquid Chlorophyl. I took 1000 mg of Vitamin C in the morning and another in the evening. I drank Kombucha for probiotic along with a very good greek yogurt, and also drank Kefir. (If you need an excellent probiotic, I highly recommend those. Kefir is easy on the tummy and is a great gut healer. I only use a half a cup per day, and was advised to start out with just a fourth of a cup to let my gut adjust. But I’ve never needed more than half a cup. And I never buy any yogurt or Kefir or Kombucha with added sugar, fruit or flavors. I always buy plain. If I want fruit in it, I use fresh, unsweetened.) SO…. After four days, I began taking Doxycycline, Metronidazole, Atovaquone/Proguanil, Metanx capsules, Nystation, Fluconazole, and Methylcobalamin injections (B-12). I was on that for 8 months, alternating the antibiotics and anti malarial, not taking all of them everyday. I also alternated the Nystatin and Fluconazole. This regime worked great. It wasn’t easy at all, but I obeyed my Lyme Dr. to the tee and found great improvements. After 8 months, I was put on Azithromycin, Sulfamethoxazole, and continued with the herbals, Kefir and Probiotic pill.
Currently, May of 2020, I am still enjoying good health. I can’t say I’m doing as great as post Lyme and Co-infection treatment, but I’m nowhere near the suffering I endured prior to proper treatments. Straying from eating a clean diet has probably been the cause of the symptoms returning. So I am trying hard to get back on the clean eating path.
I hope this story has helped you in some way. May your journey bring you to a place of indescribable peace, sustaining joy, and hope for tomorrow.