During the course of over six years, I was prescribed numerous medications as well as suggested supplements to ease my burden. We wasted thousands of dollars on medications, doctor visits, and tests that were useless due to the fact all the doctors I was seeing knew little to nothing about Lyme Disease and Co-Infections.
Living through Chemistry is better than Not living at all
From the years 2004 to 2009, a well-respected rheumatologist was treating me for what he thought was Fibromyalgia and Restless Leg Syndrome, both assumed to have been “triggered” from the Lyme Disease in 2004. He had prescribed the majority of the medications. The medications were merely putting a band-aide on my symptoms as well as causing some dangerous side effects.
I was on Mirapex for over a year. I thought I had died and gone to heaven. My pain slowly subsided and I was getting back to my old self again. I was doing things I loved and finding many other interests! However, I found I wasn’t sleeping much. My mind was constantly whirling with thoughts of what I would do the next day. Then, up before the crack of dawn and go, go, go. I would re-arrange rooms in the house only to find they ‘just weren’t right’ and re-arrange them the next day, moving all the furniture, pictures, etc. I would go on shopping sprees and treasure hunts for big bargains. I found myself enjoying scratch off lottery cards and the local casino. Shortly after a year of being on Mirapex, my husband and I were watching television late at night. A commercial came on. It was a Mirapex commercial. I said, “Hey, that’s the medication I am on.” At the end of the commercial, in a very quick speaking, quiet voice we heard, ”Recently, serious side effects of obsessive compulsive disorder have been found. If you experience excessive shopping, gambling, alcohol abuse, etc….Please notify your doctor immediately.” Oh my gosh. That was me. My husband, Vince, and I looked at each other. Well, there’s another medication down the drain! Vince and I discussed the past year while on Mirapex finding that “YES” I was indeed experiencing OCD. I immediately researched Mirapex on the internet. I was amazed at what came up! ”Mirapex serious side effects!- People going bankrupt because of uncontrollable spending, gambling, etc. while taking Mirapex.” The information was scary, but a wake up call indeed. I called my rheumatologist the following morning notifying him that I would no longer be on that medication. Mirapex is a dopamine agonist. It works by acting in place of dopamine, a natural substance in the brain that is needed to control movement. Thank God, we saw that commercial.
My body quickly went back to being in constant pain. I continued on a low dose of anti depressant. The anti depressant was supposed to help with the pain. Honestly, for me, it did nothing for the pain. I was then put on Lyrica. Then Cymbalta. Followed by Savella. The list goes on. All causing some sort of dangerous side effect and doing nothing to diminish the pain.
I decided to go off all my medications, including the anti depressant. I was going to ‘cleanse’ my body for 3 months, and then see another doctor. After the 3 months was up, I was a wreck. Severe depression and horrific pain. However, I was looking forward to a visit with a new doctor. I had heard positive things about her. At first, I liked her. I thought she was fairly thorough in her exams and questioning and discussions. She encouraged me to go back on the anti depressant. I was thankful she did. Four weeks later, my mental health was a little bit better. I saw her quite often. Each time she would order more blood work. Results came back as being low in potassium, magnesium, B12 and I was anemic- ALL SIGNS OF LYME DISEASE! She tried to give me “Pep Talks” saying, “Debbie, you can not let Fybromyalgia run your life.” Deep inside I could hear myself saying back to her…. “Easy for you to say, you have no idea what I am dealing with here…and by the way I do not believe it is simply Fybromyalgia!” Finally, when my knowledge about Lyme Disease was spoken, she shut me out completely. A blessing in disguise. I mentioned this doctor in another post. She is the doctor who told me, “You can’t have Lyme Disease, you live in Wisconsin!” “Bye Bye” to yet another doctor.
In early summer of 2010, while I was on a waiting list to see the “Best of the Best” lyme docs in Wisconsin, I knew it was important for me to prepare my body for what was to come. My immune system was very weak. According to blood results, I was deficient in many things. It was pertinent to get my ‘gut’ ready for the heavy-duty medications I would be put on to kill off the bacteria, therefore, probiotics were in order. I researched, read books, and asked a lot of questions on internet forums and support groups for Lyme Disease.
To start off, I began taking Acidophilus, a probiotic. This was to replenish the good bacteria in my intestinal tract. I started taking prenatal vitamins. I found the prenatal vitamins to be much easier on my stomach. I also started increasing my daily doses of vitamin C and Magnesium and Alpha Lipoic Acid. I drank Aloe Vera juice and Olive Leaf Extract. I was and still am a fan of Super Seed Beyond Fiber that not only helps the digestive system, but also has the important Omega 3 Fatty Acids.
In August, 2010, my new treatment plan with antibiotics for Chronic Lyme Disease began. My doctor, Dr. ‘H,’ told me up front, “I will treat you like no other person. That is because every BODY is different. Every person responds differently to Chronic Lyme Disease and Co-Infections. Your case is unique just as all Lyme cases are unique. Every person responds differently to medications. We will work together to find what works best for YOU! We will be switching medications throughout your treatment, using different ones to attack different issues.” I asked, “Am I ever going to be cured?” ….. there was a pause. Then he responded, “I will treat you for as long as need be to get rid of this disease.” There was a sense of comfort knowing I wasn’t talking to another doctor who thought it was “All in My Head.” However, there was also a sense of uncertainty. Will I ever be cured?
For the first six weeks I was on the following treatment:
Clarithromyc – low dose of antibiotics working towards higher dosage. Daily
Nystatin- For yeast control. Daily
Nexium- To protect my stomach. Daily
Fluoxetine- Anti Depressant. Daily
Acidophilus- Daily (Quickly changed to a HIGH Potency Probiotic)
Cyclobenzaprine – For Muscle Spasms. As needed
Butal/APAP/CAF – For Migraines. As needed
I altered some of my vitamins and supplements following Dr. Burrascano’s Guidelines.
Ester C - 3000mg Daily.
Alpha Lipoic Acid – 600mg Daily.
Magnesium (Triple Magnesium Complex) 800mg Daily.
Essential Fatty Acids- I get through the Super Seed Beyond Fiber- Daily.
Prenatal Vitamin- Daily.
Vitamin D- now on a RX maintenance once a month.
After starting a low dose of antibiotics, my belly quickly expanded to the size of a 6 month pregnancy. I called my Lyme doctor and mentioned my problem. He asked if I was taking a probiotic. I answered, “Yes” explaining it was Acidophilus. He said my body was susceptible to yeast and with the antibiotics, I will need a much stronger probiotic, a HIGH Potency Probiotic. My intestines had quickly filled up with yeast. Off the antibiotics I went and onto an anti fungal until the yeast subsided. I also started taking a stronger high potency probiotic. I cut out all sugar from my diet and started a VERY LOW carb, lean, high protein diet with as many fresh vegetables I could eat! NO ALCOHOL. A lot of water and green tea.
On the morning of September 13, 2010, I could not believe my eyes. What I thought to be another tiny freckle on my ankle the night before, was now an engorged deer tick. My blurry eyes and shaky hands properly removed it, however, it fell to the ground. I was upset with myself for not having a towel or sheet of sorts underneath my ankle while removing it. I could not find the tick. Within hours, the tick bite produced a bull’s eye rash. I DID however, take a picture of the tick bite and rash. I called my doctor. He assured me I would be ok. I was already on treatment for Lyme Disease.
Less than six weeks into treatment for Chronic Lyme Disease, I found another deer tick embedded in my ankle. Within hours after removing the tick, my ankle swelled up producing a bull's eye rash.
Later in September, 2010, I went back to see my Lyme Doctor. My headaches were much worse, the longest one lasting for 10 days. I had experienced such severe migraines that my eyes would swell shut. I broke out in small rashes on various parts of my body. My fevers continued, mostly at night, and sore throat and swollen glands, with drainage coming from the lymph nodes. I was very dizzy. I was experiencing, “HERXING,” a die off of the toxins and spirochetes in my body. I was not alarmed. I was familiar with this because of my treatment in 2004. During treatment, I knew I would get much more sick before I got better. The treatment was indeed working, but we had a long road ahead. My medications were somewhat altered. The Clarithromyc dosage was increased. For the neck spasms traveling up into my head causing migraines I was put on a ‘cocktail’ of Diazepam and Buta/APAP/CAF- which finally provided some relief!
Over the past five months, my medications changed as my symptoms changed. We found that as the Lyme Disease (spirochetes) were dying off, other symptoms were coming out stronger. These are the co-infections that were NEVER addressed in my first round of treatment in 2004.
In November 2010, I was experiencing the following symptoms: blurry vision, shortness of breath, anxiety and panic attacks, extreme fatigue, coughing, night-time and early morning fevers, occasional lower pelvic pain, vomiting, ringing in my ears, short-term memory loss, very painful bones and joints, neck stiffness and migraines, and DEEP muscle pain in the larger muscles. I had lost 14 pounds since I started treatment. A positive sign. Doc ‘H,’ believed we were also dealing with at least two co-infections; Babesiosis and Bartonella. However, he believed the route we should take is eliminate the Lyme spirochetes as best we can, then start attacking the co-infections.
Treatment changes:
Doxycycline – Daily.
Clarithromyc- Daily.
Zofran- For nausea and vomiting as needed
The end of December 2010, we started to attack one of the co-infections, Bartonella. We knew the Lyme Disease was not completely out of my system, however, the treatment was indeed working. The Bartonella was the strongest co-infection at this time that was ‘breaking through’ and showing its true colors.
Treatment changes:
Riphamin – Daily.
Doxycycline- Daily.
No more Clarithromyc
Mid January 2011. I continued having the previous symptoms, however, new ones were developing as well. Small, streak-like rashes were on my arms. They would come and go without warning. I was experiencing chest pain. My right side was having bouts of numbness making it difficult to drive and/or walk. My weight loss was now 20 pounds. My call into Doc ‘H,’ confirmed that we were definitely dealing with co-infections now. He reminded me that my health didn’t become “CHRONIC” overnight. We have only just begun this part of the journey. If it would have been diagnosed and treated properly in 2004, chances are, I wouldn’t be dealing with it now.
The majority of the daily medications I have to take at this time... all because the medical community wouldn't listen the first time around in 2004.