On being grateful for #Lyme

phoca_thumb_l_b1It was a long and frustrating process leading up to my diagnosis of Lyme disease. My doctor’s best estimate is that I had Lyme for 3 to 4 years. Over that period of time I had many strange and bizarre symptoms. There were times when I wondered what was happening to me. Sam was probably beginning to think I was a hypochondriac. I was beginning to wonder! Just before being diagnosed, I thought I had done a thorough enough internet search to know that I had some type of autoimmune disease. Of course one of the things in the back of mind, could it be cancer? No weight loss here, especially without even trying, so I pushed that thought away. Considering my age, some symptoms I simply figured were a part of this stage of life. Self-diagnosing using the internet can be dangerous. 🙂 It was a bit worrisome. I had been to my doctor many times over those 3 – 4 years as well. She was patient with me. She ran blood tests. Tests for Lyme. Tests for autoimmune and who knows what else. She was sympathetic, yet baffled.

Somewhere in all of that, my heart developed A-fib. I was often dizzy, extremely tired, my heart raced and at night it felt like it was pounding out of my chest. That kept me awake. Consequently, I was not sleeping well. One day I went again to see my doctor, specifically because of all the heart craziness going on, plus I had the worst headache of my life. She found my heart was beating over 180 beats a minute and my blood pressure was elevated. She calmly told me she needed to call an ambulance and that I needed immediate emergency medical attention. I thought she was over reacting. That day began a 5 day hospital stay. It took them that long to get me back into sinus rhythm. A few months later I required a cardio ablation. All this terminology was new to me. Looking back on what I know now, my A-fib was likely a result of my Lyme disease. Regardless, I would rather have a Lyme diagnosis than so many others. It was actually a relief to simply have what seemed like an accurate and viable diagnosis. There was finally light at the end of the tunnel. Although I had no idea how long that tunnel would be.

Some of my other symptoms over the years included extreme nerve pain when anything put pressure on my right knee, even slightly. That came. Hung around for awhile. Then left. I also had what can only be described as pain from someone sticking me with a pin. That happened at any time of day or night and all over  my body. Sometimes at night I would throw the covers back thinking something must have bitten me, but there was never any thing there. Was I going a bit crazy? That symptom came. Hung around for a while. Then left. I also had muscle fatigue, even though I wasn’t working out. I had no energy for that. I was so frustrated thinking, “how can I possibly be this out of shape.” The final straw came when the fatigue was so bad I could barely muster enough energy to do much of anything. I googled ‘extreme fatigue’ and decided, so this is what peri-menopause is like. I would drag myself to Sam’s office and sleep half the day on his sofa. With the dizziness, lightheadedness and fatigue it sometimes was a bit scary being home alone. I finally came to the end of my rope and went to see another doctor whom I had seen in the past. He has an integrative practice and doesn’t accept insurance so unfortunately that is not my first line of defense.

We had a long talk at that doctor visit about everything that had been going on with me over the past few years. That, along with my blood test markers, including markers for Lyme disease and various auto immune diseases, gave him a 99% assurance I had Lyme disease and that I had had it for quite sometime. That day I learned the main blood test for Lyme is only accurate 30% of the time. The longer you have had the disease, the less likely you are to get a positive result. There is other testing you can undergo, but it is cost prohibitive. I was good with his 99% assurance.

The past year has been information overload. I have learned that Lyme disease is rampant. There are many people walking around with an auto immune diagnosis when in reality they likely have Lyme disease. There are literally hundreds of possible symptoms for Lyme. Many symptoms present as a whole lot of other possibilities. Symptoms may come and go, and come back again. That’s normal with Lyme. It is a hard thing to diagnose without a positive blood test or an actual sighting of the telltale circular rash. Many people never even knew they had a tick bite. That was me.

I started my treatment one year ago next month. I am happy to say I am much better now. So much better. Sometimes I think the side effects from the antibiotics are the worst thing about it at this point. In about 5 months I’ll begin the ‘maintenance’ portion of my treatment. I will hang in there with treatment to the bitter end. There are days my gag reflex kicks in at the thought of taking so many pills. My doctor told me that he has had patients who drop out of treatment when they begin to feel better. Lyme then takes off again with a vengeance and they are back to day 1 of treatment. I will not be a drop out.

I have been on multiple antibiotics in every protocol I have undergone. Not everyday. Lyme treatment uses what is called a “pulse regimen” which means on and off in a specific pattern. I also take about 10-15 supplements every day, twice a day, to boost my immune system and to help counter the awful side effect of the antibiotics.  With Lyme it’s important to have a doctor that specializes. FullSizeRender-1Main stream medicine often does not treat Lyme effectively. Even with health insurance it is an expensive proposition. Not necesarily due to the doctor, it’s more due to the cost of the antibiotics and supplements. I have been so blessed to have Sam with me all along this journey. It had often been overwhelming and he keeps me calm and organized. He is my in-house drug pusher. So grateful for him. Considering all the possible diagnoses out there, I am grateful for Lyme. It was a great relief to have an answer.

This is the lowdown on all my protocols, therapies and supplements:

Remove processed foods, gluten, dairy, GMO and refined sugars to avoid undue stress on the immune system. Exercise up to your ability along the way. Sleep. Take baking soda and Epsom salt baths 3 times per week. Infra Red Sauna 30 minutes 3 times a week if possible. Dry brushing & massage are also helpful.

Take high potency, good quality multivitamin, chlorella, ALAMax to support liver and kidneys, Floramend probiotic, ProOmega with GLA, Tocomin SupraBio, MethyProtect & ACZ Nano. These are taken 2 times a day, every single day.

My 1st protocol consisted of Omnicef, Minocycline & Septra on Monday, Wednesday & Friday for week one. Repeat those for week 2 and add Flagyl on Thursday and Friday. Week 3, no antibiotics. Repeat 2 more times.

My 2nd protocol was for Lyme & Bartonella and consisted of Omnicef, Rifabutin (super expensive – I bought it from Canada at a huge savings, but still expensive) & Septra. Repeat for week 2 once again adding Flagyl on Thursday and Friday. Week 3, no antibiotics. Repeat 2 more times.

My 3rd protocol was the same as the 2nd only I had 2 weeks off in between meds and only repeated it twice. A bit of a reprieve.

My 4th protocol is for Lyme and Babesia. I forgot to mention earlier that Lyme has several little parasites of sorts that attach to it. They also must be attended to. This protocol consists of Omnicef, Malarone, Septra, & Artemisinin. Two of which are anti-malarial drugs. Those are all on Monday, Wednesday and Friday for week one and two with Flagyl again in week 2 on Thursday and Friday. Week 3 is no antibiotics. Repeat 2 more times.

My current protocol is the same as the 4th for the 1st 2 weeks. The 3rd week I add Coartem on Monday, Tuesday and Wednesday. The rest of that week and the following week I am off antibiotics. This is repeated 3 times. See why I need Sam to keep me organized?!

Next is the “scrubber” phase. I don’t know exactly what that will be but I understand it is quite intense. It should scrub any last remnants of Lyme and ‘friends’ out of every corner and hiding place. Lastly, the maintenance program. It will last 6 months to one year, involving some antibiotics for one week each month and then the rest of the month off. This is to catch any stragglers. So, the rest remains to be seen. I will be so thrilled to be through this tunnel. Although the light is already getting brighter. I feel so much better…in spite of all the side effects of antibiotics.

I really am grateful.


About along the journey

public private ramblings - myfullemptynest
This entry was posted in Gratitude, Lyme Disease, Protocol, Treatment and tagged , , , . Bookmark the permalink.

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