Why aren’t you better yet?

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I get asked this question a lot, not necessarily directly, but I know that people are thinking it, and I don’t blame them because I wonder too.

Because each Lyme patient is infected with different organisms, no two people are ever effected in the same way. Each person’s symptom picture is like a snowflake- unique and never duplicated. Some people suffer primarily from neurological issues (anxiety, depression, memory loss, and even mental illnesses like schizophrenia), while others suffer from digestive disorders, and still others suffer from extreme fatigue and fibromyalgia-like pain. The symptoms for each person are always at least a little bit different, and therefore, require different treatments. Unfortunately, it can take some time and a little bit of trial and error until the effective treatment is found.

Sometimes I feel like a guinea pig because everything is a clinical trial, you never know what will work for you or how your body will react to each new medication, herb, or supplement. I was on and off of antibiotics for a year, and although they work miracles for many people, I didn’t tolerate them very well. I did make some improvements, but in the end, the costs outweighed the benefits, and the damage done by the pharmaceuticals was more significant than my Lyme doctor and I thought was permissible.

A few months ago, I decided to switch from conventional medicine to a natural approach. Honestly, I would have preferred natural medicine to begin with, but I don’t regret working with a Lyme Literate Doctor (LLMD) before venturing into the world of natural, holistic medicine. I have learned a lot about Lyme in the 15 months since my diagnosis, in large part thanks to my LLMD, and I feel much better equipped to navigate the broad world of alternative treatments than I would have a year ago. I have been working with my new ND for the past several months and have been really happy with his insight. He has discovered several things that need improvement, and for the past several months I’ve been working on strengthening my immune system, killing dormant viruses, and detoxing. During my last appointment, we discussed three more major issues that need to be addressed, which are, H. Pylori, hypothyroid, and estrogen dominance. Each of these things could play just as big of a part in my symptom picture as the Lyme, the question is, how big of a role are each of them playing? It’s impossible to know until we start to treat them. Below I will briefly discuss the effects of each of these issues as well as my treatment for them.

Estrogen Dominance– Can cause cancer along with a multitude of other symptoms like, muscle and joint pain, PMS, painful menstruation, headaches, etc. I have all of these things, but then again, Lyme can cause all of these symptoms as well. My latest lab results revealed that my estrogen levels were grossly higher than they should be and that both my testosterone and progesterone levels were very low, in fact, my progesterone levels were so low that they could not even be recorded. To remedy this, I’ve been taking chaste berry and macafem as well as a special progesterone cream from a compounding pharmacy.

Hypothyroid– Seems to be common among Lyme patients and is known to cause an array of symptoms, such as, muscle aches, muscle pains, hair thinning, impaired memory, muscle weakness, changes in finger and toenails, dry skin, etc. Again, I have all of these symptoms. To treat this, I am going to start taking bio identical hormones (yes, kind of like the ones your mom is taking to help her through menopause). I tried a desiccated thyroid drug earlier this year and had some pretty terrible side effects, and so I am crossing my fingers that the new meds will help me out. I’m optimistic that they will.

Helicobacter Pylori– “A spiral-shaped bacterium commonly found in the stomach. The bacteria’s shape and the way they move allow them to penetrate the stomach’s protective mucous lining, where they produce substances that weaken the lining and make the stomach more susceptible to damage from gastric acids.” (WebMD). Basically, H. Pylori is a common bacteria infection that can wreck havoc in your body, sounds a lot like Lyme, right? H.Pylori causes peptic ulcers in 10% of those infected and cancer in 3%. It’s nothing to mess with and can sometimes be difficult to eradicate. I’ve been taking strong herbs for a few months to treat mine. You can view my treatment plan here to see which herbs I’m taking.

When it comes to answering questions like, Why aren’t you better yet, How long will it take to get well, Do you feel like you’re improving, the simple answer is that I don’t know. Some days I feel better than others, and small things have improved while others have gotten worse. The scale that I use to measure my improvement is much different than the average healthy person’s scale might be. For instance, I couldn’t watch TV for a solid year, it contributed to my headaches and would make me dizzy and nauseous. There were 4-5 months where I could hardly look at the screen on my phone. I couldn’t stand to email, and sometimes it was too much to even send a short text. Somehow, I have gradually improved in this area and have been enjoying my parents’ 60 inch TV rather than watching TV on my iPhone. That my friends is a huge victory for me, a marked improvement.

I choose to celebrate the little things, but from the outside looking in, I’m sure that my condition is confusing. I know that my progress seems slow, and that’s mostly because it is. I will never stop believing that one day, I’ll find that magic bullet that will contribute ten fold to my disease recovery. However, in my case, I believe that my Lyme infection is only one piece of the puzzle. There are obviously other factors at play, as discussed above, that have allowed me to become so very ill. It’s more likely that it will be a combination of herbs, supplements, medications that gets me well, rather than just one magic bullet. In short, what all of this means is that I must remain hopeful and patient.

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A sweet friend shared the above picture quote with me, and I resonate with it so much. I have definitely had my fair share of cries over this stupid disease. I’ve been frustrated, overwhelmed, and just plain exhausted with having to deal with this junk. But one thing that I will not do is give up.

XX, K

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11 thoughts on “Why aren’t you better yet?

    • I am so glad to hear that! Do you have Lyme as well? I truly believe that a good attitude is so crucial to healing. At the same time, I know how easy it can be to get discouraged when things don’t go the way you hoped they would. Wishing you all best and quick healing!

  1. Sweet Kayla, I am adding you to my daily prayer list. You are such a strong, active woman and I’m so sorry you’re having to deal with this. I am glad I read this because I really don’t know much about this debilitating disease. Your outlook, maturity, and courage inspires me so much. Please let me know if I can do ANYTHING for you!! Xoxo Jen

    • Thank you so much, Jen, your words mean so much! It feels good to have an opportunity to share my story, and I hope that others can benefit from it one way or another. And of course I will take all of the prayers I can get! xoxo.

  2. Kayla – this is such a beautiful blog – so encouraging to anyone who is traveling down this road, or a similar path. It is especially, enlightening for those of us who want to know more about what you are experiencing. Your words resonate with so many emotions – the resilience, the courage and the determination to face this and manage to improve your daily outlook. You try to take every positive advancement in stride, but also to celebrate these moments as well.

    All I can say is that each of us reading this should keep this as a reminder that life is a gift, and we should be thankful for all of the little things we do daily that we take for granted. I know I am.

    I love you Kayla Marie –

    Mama Z

    • Thank you so much for your sweet words and encouragement, Ms. Pam! You are such a sweetheart, and I’m glad that you’re enjoying the blog. It feels good to have a voice and an opportunity to help people, even if only from the comfort of my couch. Love you!

    • Thank you! I feel like it’s really tough to even begin to explain to outsiders why it’s taking so long to recover from Lyme. Most people don’t understand the disease or realize that I am still as sick as I am, they just expect that I am better by now. I read your latest post about your trip to your ND, and I was so happy to see that you are treating other issues before you begin to tackle the Lyme. I feel that it’s SO important to get your immune system in a good place before pounding your body with antibiotics, even natural ones. Once you get your cd57 back you’ll know if most of your symptoms are Lyme or if the other problems you’ve discovered are contributing more to your symptoms. In my case, my cd57 is actually pretty high, and I believe that the Lyme has caused and allowed the other issues (hypothyroid, hormone imbalance, candida, H. Pylori) to flourish, causing me to be so sick. Anyway, that’s just my two cents. Glad to be connected with you! XX.

      • Thanks so much for your encouraging words! Yes, I’m really happy with the approach, too. It is good to hear from someone else that “gets it” for sure!

        Would you say that you feel better now than you did when you started treatment?

      • I absolutely, without a doubt feel better. When I first started treatment I was so ill that I literally could not sit up for anything other than to eat. I would even drink lying down because I didn’t have enough energy to sit up. I was miserable and felt terrible 24/7 for months. Even though I am far from being well, I have a lot more energy and less pain than I did back then. There are lots of other small things that have improved which has helped my quality of life to be greater as well, but I won’t get into all of that 🙂

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