My Lyme – My Voice
By Holly Roesing
I originally grew up in Connecticut, however, to my knowledge I never was bitten by a tick. I lived in the Northwest corner/Litchfield County for 30 years.
My husband and I decided to move to South Carolina after 9/11. In 2005, while on a three-day outdoor classroom camping trip on Lake Marion, SC with the 5th graders from the elementary school where I taught, I located a speck on my stomach while showering and I knew I did not have a mole or beauty mark there. The spot was flush with my skin, and it took everything I had to dig it out without taking my skin with it. When I finally removed it, I placed it on the sink, and it started to walk. I had been bitten by a tick and able to get the entire specimen out. I knew enough to get the tick tested, so I put it in a Ziploc bag.
The downside to this I didn’t know any symptoms for any tick-borne illnesses. I sent the tick enclosed in the Ziploc bag to my mother in Connecticut so she could drop it off at the Health Department. I ignored a few early onset symptoms like joint pain and attributed it to doing too much (i.e., coaching/playing softball/being active). I never got a bull’s eye rash.
Approximately eight to ten weeks later, the State of Connecticut mailed out the letter stating that my tick was a “Lone Star Tick” and it had tested positive for Borrelia burgdorferi, the bacteria which causes Lyme disease. I took that letter to a local doctor who didn’t know much about Lyme disease, but she put me on a two-week supply of Doxycycline.
Fast forward three years to 2008. I was diagnosed with pericarditis from an unknown cause and placed on bedrest. The doctor thought it was very strange for me to have this condition, especially at such a young age, 36.
In 2009, I continued to have heart issues: palpitations, above average heart rate, skipped beats, my resting heart rate would jump around, and I felt dizzy. My doctor had me wear a Holter-monitor on more than one occasion to see if a cardiologist could capture the irregular beats. He knew something was wrong, but couldn’t give me a proper diagnosis, so he placed me on Toprol XL to help with the symptoms.
The following February of 2010, at the age of 38, I underwent an emergency hysterectomy. I didn’t receive a diagnosis until after surgery with adenomyosis, in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus (the myometrium). Later this was determined to be a Lyme-related condition.
Later that year I suffered two TIA mini strokes. I lost my speech, short and long term memory, and my handwriting for over a year. I missed a lot of work as an elementary school technology teacher and every day I became sicker and sicker. My students were very forgiving when I was forgetful or repeated myself, but speaking and socializing with adults became a huge problem. I pulled away socially from almost everyone for close to two years.
It wasn’t until later that I realized that my neurologist was so bad. He never shared my real MRI results after my TIA strokes. Rather he informed me my MRI was normal; later this was affirmed to be false. A year later, when I was gathering my medical records for my LLMD appointment I learned I have two white matter lesions on my brain in the region of where based on my symptoms were either the result of the TIA strokes or what caused them.
From 2008 to 2011, I saw about ten doctors and associated Medical Universities. I went to doctors in the Myrtle Beach area, traveled to North Carolina, and even Charleston, SC to the Medical University of South Carolina. At one point in 2011, I started suggesting they test me for Lyme disease. I had one doctor walk out of my appointment saying I read the Internet too much. I handed another doctor information on Lyme disease, and she threw it in the trash right in front of me saying there is no Lyme in South Carolina. I was given a diagnosis of Fibromyalgia from another doctor and had yet another say I had all the classic symptoms of Multiple Sclerosis.
I finally had made an appointment with an LLMD (Lyme Literate Medical Doctor). As I grew closer to the appointment, I asked my doctor to wean me off of all the crazy medications they had me on because I wasn’t coming back. I had an appointment to see a Lyme Literate MD. That doctor refused to tell me how to wean off the medications because she thought I was crazy for pursuing a Lyme diagnosis.
Those familiar with Lyme disease treatments say Lyme disease is one of the most expensive diseases to treat. I believe it, because I spent approximately $80,000, just to get diagnosed.
By November 2011, I was so close to death. I could feel my body vibrating with electrified pulses. I could barely move, barely stand, barely function. After waiting for months, I finally had an appointment with Dr. Bernard Raxlen and flew to NYC. After some tests, he diagnosed me with Borrelia burgdorferi (Lyme disease), and the common co-infections Babesia, Bartonella, and Ehrlichiosis. He told me I had one of the worst cases of Neurological Lyme (Neuroborreliosis) he had seen in a while.
He immediately had arranged for me to have a PICC-line inserted in my upper arm so I could receive IV antibiotics. He planned for me to be on antibiotics for six weeks to see how it would affect my symptoms. He further told me I could stop infused meds once I was symptom-free for two months. His six-week plan turned to 18 continued months of IV antibiotics through my PICC line together with oral antibiotics medications and herbal supplements. I administered two IV’s every day. I did not pulse (stop and start) rather I changed antibiotics every three months from Rocephin to Flagyl to Zithromyacin to Doxycycline.
During this time, I made an attempt to return to school twice a week. It was difficult because I was virtually bedridden. My husband had to carry me up our stairs. If we went on a family trip, I was in a wheelchair. I was unable to drive unless it was a necessity and under a couple of miles. I became confused easily, so I wasn’t left alone in public. I was lucky to have two teenage daughters to help with grocery shopping, household chores, and cooking. I lost valuable time as their mother during a time when they needed me most.
In mid-2013, I had my PICC-line pulled, and I was finally in a mild form of remission for about 18 months. During this time, I continued on oral maintenance antibiotics and had to take it easy. I had to put limits on myself. While I felt so much better, I wasn’t back to my former self. I accepted this because it was so much better than where I was a short time ago.
My insurance company dropped me at month 11 of treatment, so I had to pay for my treatment out of pocket for the remaining six to seven months of IV treatments. They told me I was lucky. I had slipped through the cracks. Normally, they did not pay for Lyme-related expenses beyond six months. I’m still paying off the horrendous $25,000 today.
Unfortunately, around December 2014 and January 2015, I became extremely stressed from a family situation, which caused my symptoms to become exacerbated. It was very hard on my body, and I relapsed in January of 2015. I had ten significant Lyme symptoms return, such as blurred vision, joint pain, air hunger, headaches, muscle cramps, and fatigue.
I was adamant I did not want to take harsh antibiotics again after putting my body through so much the previous year. However, I ended up filling my prescriptions costing about $150. Meds included Mepron, Coartem, Zithromyacin, Artemisinin, B-12 Methylcobalamin shots and VSL #3 probiotic, to name a few.
It was around this time when a friend suggested I try her ‘Greens’ powder supplement. I was so tired of people pushing their miracle powders on me, so I refused. After a week or two on all of the antibiotic meds and more prodding from my friend telling me how great her powder supplement was, I relented, and I tried them. I figured if they didn’t work, I had all of those prescription meds staring at me on the counter.
After four weeks of being on the greens as a daily regiment, I was feeling fantastic. By week six, I was back in remission. But this time, I had so much more energy, clarity, etc. I never looked back. To this day, I have never skipped a morning dose, and I have been able to stay away from antibiotics.
My entire family was so happy to see my progress while on the ‘Greens.’ My husband told my friend, “Thank you for giving me my wife back.” I can also honestly say the remission I experienced post PICC-line-18 months earlier did not compare to how much better my body felt when I took ‘Greens.’
There is no cure for Borrelia burgdorferi, the bacteria responsible for Lyme disease. But I am in remission. I have never felt better and certainly haven’t had this much energy in a very long time. I believe the secret is the pH balance powers of the ‘Greens.’ Disease thrives in an acidic body. In general, degenerative diseases are the result of acid dumps or a build up toxins inside the body when the bacteria isn’t eliminated through the gut tract (small and large intestines quickly enough) the body holds them in the liver, pancreas, gallbladder, before finally releasing toxins in the gut. But when we can cleanse these toxins from our body and our pH levels increase dramatically. If you think low pH = acidic and high pH = alkaline, this helps put things into perspective. Everyone needs to have a body that leans toward being alkaline so that toxins, even cancer can’t grow. After they helped me so much, I decided to take the opportunity and become a distributor to help pay off my $25,000 PICC-line bill by selling them and sharing my testimony with other Lyme sufferers and those with Chronic illness.
I am now a Lyme Advocate for friends, family, and strangers all over the world. I began an advocate support group in South Carolina and am the administrator for two support groups in North Carolina. I have set up several Lyme information booths at events around the community. I also co-founded the “Be Kind for Lyme” movement with my friend Mary Ann. You can find us on Facebook, Instagram, YouTube, Pinterest and Twitter. We also do a ‘3 Question Interview’ campaign through ‘Be Kind For Lyme’. To date, we have interviewed: the people associated with ‘Lyme is Hell’, commercial producers in the Netherlands; Jordan Fisher Smith from Under Our Skin; John McLean from ‘Nat Cap Lyme-NC Chapter’; David Skidmore from ‘Lyme Loonies’; Celeste Zelasko on Congenital Lyme, and her experiences with Dr. Charles Ray Jones; and so many more to come.
Today I have so much energy and feel great which is so amazing considering I couldn’t even lift my head off the couch or walk upstairs at one point. The bone crushing fatigue is all but a distant memory now. I no longer get Lyme migraines anymore either. I have been able to enjoy pizza and sweets once in a while, and I can even enjoy a glass of wine without feeling drugged. I still watch my diet, but I’m not as restricted with what I choose to eat. But I am still a vegetarian. That is something that will never change. I have even been able to walk three to five miles at a time, with no joint pain.
I help several people every week. I now say I believe God gave me this disease for a reason. So I can help others deal with this debilitating illness.
Thank you for this opportunity to be a part of ‘My Lyme – My Voice’.
Holly can be found:
More about ‘Greens’ – This short video on ‘Greens’ powder supplement video on my website above.
‘Greens’ costs about $1.00 per day. While there are many other awesome products out there that offer some of the same benefits, I found this one to be in my price range.
Thank you to LA Edwards for doing these bogs posts and thanks to Holly for sharing her story. I hope people learn the signs of Lyme Disease and be their own advocate. There is a huge problem in the medical community with lack of education and lack of funds to help us with Lyme. Most of us in the Lyme community have paid enormous amounts out of pocket and had to go through many drs before we can find one that understands Lyme and even start to treat us. By then it usually becomes chronic and causes many other health related issues.
Articles like this helps people become more aware and hopefully will help make change in the medical community.
LA Edwards says
Thank you for providing comments. And I felt very strongly that I wanted to help out with May Lyme Disease Awareness Month in some way and since my own health has been failing, It had to be something on the internet and through my blog along with the help of Rachel Thompson and #MondayBlogs I knew I had a fighting chance to make even a small dent in this enormous issue. I agree, more stories about people with Lyme disease and what they have gone through is vital to public recognition of the seriousness of this issue. I also believe more doctors should be required to become aware of Lyme disease and not by simply attending any old one-weekend conference. They need to be schooled by the appropriate Doctors through the Infectious Disease Society of America (IDSA) found on the web at IDSA.org. Any doctor MD,ND,PHD,OD are eligible to apply to programs that can educate them on Lyme disease. As a physician their program will teach them what is necessary to look for in a patient via signs and symptoms to what treatment protocols work the best. And inform them how tests are unreliable and largely inaccurate. Therefore, Lyme is basically a clinical diagnosis based on the patients symptoms. If the patient has been bitten by a tick or displays a bull’s eye rash, this makes the clinical diagnosis more straightforward. For those who get bitten or believe they have Lyme Disease former ILADS President, Dr. Richard Horowitz has designed a great form found on his website http://www.cangetbetter.com/medical-center in which one can find out a lot of vital information as well as fill out a form designed by Dr. Horowitz, to determine the probability the patient has Lyme disease or a co-infection. This form can be taken in with them at the time of their appointment preferably one with an LLND because they have a larger arsenal in which they can use to treat the disease and any co-infectors, but LLMD should be able to treat the disease as well. I see a wonderful LLND who is fabulous and I work with a team of doctors who help treat my Lyme disease and various co-infections I have and their symtoms. I fully agree that if we could have even a fraction of the money that has gone to treat Zika and West Nile we might be further along. Thanks again for your comment. I am grateful Holly volunteered to submit her story. Thanks again. LA Edwards, PhD