My Lyme – My Voice

Guest Author: Holly Roesing

I originally grew up in Connecticut – however, to my knowledge I was never 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, I was bitten by a tick, here, while on a 3 Day Outdoor Classroom camping trip with the 5th Graders at my school. The camp was located on Lake Marion, SC. I located a tiny speck on my stomach while showering and I knew I did not have a mole or beauty mark there. The speck 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 gotten the whole tick out. I immediately placed it in one of my Ziploc bags.

I knew enough to get the tick tested, but didn’t really know the symptoms. I sent the tick 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 did NOT get a bullseye rash.

Approximately 8-10 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 Lyme. I took that letter to a local doctor who didn’t know much about Lyme, but she put me on a couple weeks of Doxycycline.

Fast forward to 2008, I was diagnosed with pericarditis for months from an unknown cause and was placed on bedrest for a while. The doctor thought it was very strange for me to have this condition, especially at my age, 36.

By 2009, I continued to have heart issues; palpitations, above average heart rate, skipped beats, my resting heart rate would jump around and I even felt dizzy. My doctor issued a Holter monitor on more than one occasion to see if the cardiologist could capture the irregular beats on the monitor. 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.

In February of 2010 – at the age of 38, I underwent an emergency hysterectomy. I didn’t receive a diagnosis until after surgery with Adenomyosis. This is a condition 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.
Also, later in 2010 I suffered two TIA strokes. I lost my speech, short and long term memory, and handwriting for over a year. I missed a lot of work as an elementary school technology teacher and every day I got 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. This was later affirmed to be false. An entire 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 one doctor some Lyme information 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 one doctor and had another say I had all the classic symptoms for Multiple Sclerosis. As I got closer to the appointment I made with an LLMD in NYC, I asked one doctor to wean me off of all the crazy medications they had me on because I wasn’t coming back and had an appointment to see a Lyme Literate MD. That doctor refused to tell me how to wean off the meds because she thought I was crazy for pursuing a Lyme diagnosis. They say Lyme disease is one of the most expense diseases, I believe it, I spent in the area of $80,000, just to get my diagnosis.

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. I was diagnosed with Borrelia burgdorferi, Babesia, Bartonella, and Ehrlichiosis. He told me I had one of the worst cases of Neurological Lyme that he had seen in a while.

He immediately had me put on a PICC line – which started out as a 6 week plan to see how it would affect my symptoms. I was told that I could come off of infused meds once I was symptom free for 2 months. This eventually led to 18 continued months with the picc line meds along with oral antibiotic medications and herbal supplements. I administered two IV’s every day. I did not pulse. I didn’t stop. My LLMD merely changed the antibiotics every three months from Rocephin to Flagyl to Zithromyacin to Doxycycline.

During this time, I attempted to go to work to see my students twice a week. I was mostly bedridden and my husband had to carry me up the 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 confused very easily – so I wasn’t left alone in public. Although 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, My PICC-line was pulled and I was finally in a mild form of remission for about 18 months. During this time I still was required to take oral maintenance antibiotics. I still had to take it easy. I still had to put limits on myself. I felt so much better, but I wasn’t 100% back to my former self – however I accepted this because it was so much better than where I had come from.

My insurance company dropped me at month 11 of treatment, so I paid out of pocket for the remaining six to seven months for IV treatments. They told me I was lucky because I had slipped through the cracks and that they normally do not pay for any Lyme related expenses beyond 6 months. I’m still paying off the horrendous expense of $25,000.

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. I relapsed in January of 2015. I had ten significant Lyme symptoms return, such as blurred vision, joint pain, air hunger, headaches, muscle cramping and fatigue.

I didn’t want to go back on harsh antibiotics again after putting my body through so much the previous year. However, I decided to fill my prescriptions costing about $150. This included Mepron, Coartem, Zithromyacin, Artemisinin, B-12 Methylcobamin shots and VSL #3 for my probitioc – to name a few.

It was about 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. However, after about a week or two on all of the antibiotic meds and after a few more times of her telling me about them – 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.

Around week four of being on the greens as a daily regiment, I was feeling amazing! 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 was able to stay away from the antibiotics.

My entire family was so happy to see my progress while on the greens. My husband thanked my friend and said, “Thank you for giving me my wife back.” I can also honestly say that 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 alkaline and 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 of toxins inside the body when the bacteria is not passed through the gut (small and large intestines quickly enough) the body holds them in the liver, pancreas, gallbladder, and gut. But when we can cleanse these toxins from our body our pH levels increase dramatically. If you think low = acidic and high = alkaline. This will help put things into perspective. Everyone needs to have a body that leans toward being alkaline so that toxins even cancers can’t grow.

I am now a Lyme Advocate for friends, family and strangers all over the globe. 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 the “3 Question Interview” campaign through Be Kind For Lyme and have interviewed people such as the “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!

Current Update on how I am feeling today: I have more energy than I know what to do with!! That is so amazing to me when I couldn’t even lift my head off the couch or walk upstairs. The bone crushing fatigue is a distant memory now. I don’t get Lyme Migraines anymore. I have been able to enjoy pizza and sweets once in a while and I can even enjoy a glass of wine without feeling like I was drugged. I still watch my diet but I’m not as restricted with what I choose to eat. I am also still a vegetarian. That will never change. I have been able to walk 3-5 miles at a time and I have not had any 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 disease.

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9 thoughts on “My Lyme – My Voice

  1. My daughter also has Lyme and has been stinging herself for the past year with honey bees. It seems to be working, but I’m curious as to what the green drink was. Can you share that pease?

    Liked by 1 person

  2. Thanks for sharing ~ your story gives me hope. PIC line got infected by day 4 for me with very serious infection so I never did it. The greens make sense and I Will look into to adding to my current protocol.
    20+ yrs misdiagnosed wit MS!
    Last MRI (last month) Radiologist actually referred to Lyme and specific to some of my lesions! (This was after I requested to speak to him after the test) It will be interesting to hear what my Neuro says at follow up app appointment. Maybe they will pay closer attention for next person.
    I’m in Savannah, soon to be moving to S. Florida . Do you happen to know of any doctors down there? My doctors here all bailed on me.
    Thanks again for sharing and God Bless You, You ARE helping!,

    Like

    1. Wow, what a long haul Gayla. I’m so sorry that you’ve experienced difficulty with doctors like so many of us. What kind of doctor are you looking for aside from specializing in Lyme? Are you looking at medical doctors, naturopathic doctors, or something else specific or are you open? Are you on Facebook? There are Facebook groups that focus on Lyme in various regions – if there isn’t one for southern Florida there is likely one for the state of Florida. That would be a great place to ask for doctor referrals, as folks there will no who the options are. I know it can be so hard having been through a similar experience and I hope you can find someone you feel good about working with.

      Like

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