What have I learned?

 

 

I haven’t talked much about the medical side of my Lyme disease mainly because the spiritual side is where I am learning and growing the most. It has been quite a journey these past 20 years.

Today I sit in the DMV office trying to get my licence renewed..oh the joy! This is going to take forever! The main thing on my mind though is the call I got from my pharmacist asking about the new antibiotic that was called in. He wants to know if I need to fill it now or wait….I just got a refill of the doxy 2 weeks ago and now I am adding a new antibiotic so he has trouble keeping up with what’s going on, and I don’t blame him. I feel like a human freak show that always has to explain what is going on. The pharmacist is very helpful and works with me as much as possible, so I am very grateful for that, but it is always confusing to get my medications worked out. Not many people juggle 3 or more antibiotics at a time. My day seems to be consumed with when to take the next medication or supplement, and now I am about to add more. How did I get here? So much has happened over such a long period of time I’m not sure I could even sit down and write an accurate timeline.

I have always had annoying health related issues since I was a little girl. My teeth were bad from day one and my permanent teeth are no better. My joints have always been weak and prone to injury and in high school I dropped a lot of weight due to hyperthyroid, un-diagnosed of course. I was so hungry every hour or so but doctors always said I was fine and “lucky”. Nothing “big” happened until years later, after I had my second child.  I quickly sunk into deep depression and started to think about suicide. I thought it had to be thyroid related, I have many family members with thyroid issues, but each doctor I saw told me my thyroid was normal. I finally found a doctor in 2002, who took that concern seriously and ran several tests. Sure enough it came back low thyroid (hypothyroid) from Hashimoto’s and he put me on a natural thyroid supplement. It worked for a few years but I never quite recovered like I thought that I should. The years between 2002 and 2013 were terrible. My health really went down and I was being diagnosed with new disorders and autoimmune problems every year.  The list included, but not limited to, sleep apnea, fibromyalgia, acid reflx/GERD, Rheumatoid (positive RF) and all the side issues like high cholesterol, high blood pressure, heart palpitations and weight gain. Suicide was something I thought about many times but never felt like it was the “right thing to do”. I never felt well enough to work or even take care of my kids. I tried to run a mural/faux finish business for a few years but could not keep up with it, so it fizzled out.

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In 2013 I found a doctor who believes that so many of those issues are caused but underlying problems such as leaky gut/inflammation. I walked out of my first appointment with a long list for the labs; vitamin and mineral levels, thyroid…(all levels not just TSH), CRP, to name a few, and a saliva cortisol test kit. I felt someone was finally listening to me. That first year we tackled many issues. I had IV’s for Candida and EBV, a slew of supplements to get my levels back up to as normal as possible and food allergy/ sensitivity testing and diets, etc. I couldn’t remember when I felt so good. The big bonus was losing 65 pounds! I wasn’t expecting that but I wasn’t complaining.

The next year we dealt with heavy metal toxicity. I thought it would be the final piece of the puzzle but as soon as the metals started to “shift”, many of my old symptoms came racing back. Lyme was suspected but I went into denial. It took another year before I got serious about it. I didn’t want to think about it because I was so frustrated and angry that after all that work, I was facing who knows how much longer of Lyme treatment. I had already missed so much of my adult life and it angered me to possibly miss more, or even worse, have emerging symptoms that were more of a nightmare than all the years before. A low number on my CD 57 and a “cloudy” Live Blood Cell Analysis forced me out of denial. I had no choice but to deal with it.

Antibiotic treatment was out of the question, or at least I thought it was. My doctor gave me several options, including the name of a Lyme specialist out-of-state (Texas is not Lyme treatment friendly), so that’s who I called, even though he treats with antibiotics. I got in just before he cut off accepting new patients and it turned out that insurance would pay for most of my medications, tests and appointments. We really can’t pay out-of-pocket for treatment so this was a huge blessing. I could not deny God working through all of this. I trusted Him and started my treatment.

The first few weeks were rough because of the nausea, depression and pain. I have heard people say that the symptoms come and go and they were not kidding. One week I feel as if the end of life is near and the next I feel good enough to go camping and hiking..well somewhat. I can’t plan anything too far in advance for obvious reasons which is hard for me because I love to plan..everything.  I am having to learn all of the new medical lingo and sort through all the treatment options. That is an adventure since no one seems to agree with each other. I have decided to add a few herbals to the routine and maybe some IV’s that will give more energy and maybe hold down some of the bad symptoms. As bad as I feel, I know it could be so much worse. I believe the past 3 years have really given me a good healthy foundation with which to tackle this treatment.

If I had to go back and start over, knowing what I know now, there is really only one thing I might do differently…chelating metals. Since the Lyme and co-infections use metal to protect themselves, I think I would chelate as much as possible to expose them. Since I am already into the antibiotics I think I will chelate very slowly or do a pulsing schedule such as a few weeks on then a few weeks off. That is something I really need to figure out so I will keep reading.

One thing I have learned through all of this is how quickly people are diagnosed with autoimmune diseases and the question of “why is it there” never really gets addressed. Reducing inflammation in the gut could knock out so many autoimmune issues and Lyme really needs to be considered more often. My Lyme doctor started treating Chronic Fatigue and Fibromyalgia years ago and discovered that so many of those patients actually had Lyme. I have learned to always ask the “Why” questions and not settle for every diagnoses. Every time I see someone talk about their health I want so badly to share with them all that I have been through and learned, but everyone has to walk their own path. When I got to rock bottom is when I finally started to consider all possibilities. I don’t believe, for most of us, that we have to be sick the rest of our lives and I don’t feel pharmaceuticals are always the answer, as a matter of fact I don’t think they help much at all. What I mean by that is that most of the time they only mask healing, not really bring about healing. Sometimes we may need them for short-term but natural avenues should always be pursued. I can’t believe we are to live on them the rest of our lives. I do understand, though, that God will leave us with our sickness if it is meant to for a greater good.  God created our bodies to want to heal themselves, given the right environment, so it is up to us to provide that environment. We accomplish that by getting everything out of our lives that are toxic like beauty products, cleaning products, cookware and foods that cause allergy/inflammation for example.  Environmental Working Group is an awesome website to lookup your favorite products and see how “clean” they really are (I get no personal gain for mentioning this website. It’s just a great resource.)

God made you to live a full and abundant life… illness doesn’t have to change that. Two main reasons for starting to blog… to share what God has done in my life and to help/encourage others who are struggling with health issues. Keep looking for answers and don’t settle for misery. Most of all pray and trust God… He created you, knows you.

6 thoughts on “What have I learned?

  1. helloleahgrey says:

    Oh wow! Your attitude is inspiring. I can’t imagine how much that would of STUNK going through all those medical diagnosis’s. I’m so glad they found what it was! God bless you for being an inspiration to others, it’s just awesome!

    Like

  2. Stacey Patrick says:

    Good blog post! Thanks for sharing. I have been struggling today with where God has me. Among my diagnoses are Postural Orthostatic Tachycardia Syndrome and Dysautonomia. So, summer brings difficult days. Your post encouraged me. Thanks again.

    Like

  3. journeyofhope says:

    Amy Rengo, I am so glad you found encouragement in this post. I have just been released from my Lyme treatment and am believed to be in remission . The next few months will tell. I pray you find a good treatment plan and hang in there. There is hope. ❤️

    Like

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