7 Things Someone Should Have Told Me Before My Lyme Disease Diagnosis

7 Thingsto know before Lyme Disease Diagnosis

I have been searching for answers regarding my deteriorating health for many years.

So when I was diagnosed with Chronic Late Stage Lyme Disease this past March, I felt a sense of relief. I finally had an answer. Finally.

When I went in for my initial  Lyme appointment, I was told, “You have Lyme Disease, but, we have a plan.”

Immediately I thought “Great! A plan is a good thing!”

Little did I know that their “plan” would change my life. I just wanted to get better!

I knew very little about Lyme Disease.

But, I went home and did my research. What I found out, put a sense of fear and dread in my heart and mind. I wish I would’ve known then, what I know now! I am six months into my “treatment plan.” I feel that I have not gotten very far, if anywhere at all.

I have been sick for a very long time. And, it seems likely that it is going to take even longer to reach any measure of success with my Lyme treatments.

One recent evening, I was reflecting on the things that I wish I would’ve known six months ago when I began this journey to wellness, things that would have enlightened me. Things that might have been initially discouraging, but, would have shed some perspective on the actual heights of the mountains in front of me.

I wish I would’ve known then what I know now.

They are things I wish someone would have told me before I embarked on the road to a cure. I am still new to this leg of the journey. I am still learning. But, I wanted to share what I have derived from the short time I have been in treatment for Lyme Disease. Hoping that it would help someone else who might be facing dark days. Like someone has wisely said before, “This is a marathon, not a sprint.” Healing takes time and lots of it.

So without further rambling, the seven things I wish I had known before my Lyme Disease diagnosis:

Lyme disease is a great mimic

 

  • Lyme Disease can mimic many other illnesses. I was extensively tested for lupus, MS, heart disease and a myriad of other illnesses. I was even told by one cardiologist that I had pulmonary hypertension and a limited time to live. Two years at the longest, to be exact. Believe me, when a doctor begins to talk this way, you sit up and listen. I was frightened. I went for a second opinion. Thank goodness I did! You name it, I have been literally put through the “medical mill” and tested for it. Not only did I spend countless hours being poked, prodded, stuck etc. I also spent a lot of money! I heard many different scary diagnoses. Lyme Disease was never put on the table until the very end. Had I known that Lyme Disease is one of the great mimics, I would have approached that diagnosis from the very beginning. I would have saved myself countless hours, much physical heartache, much pain and a lot of money. Money that could have been put towards my treatments for Lyme.

 

  • Treatments for Lyme Disease can cause you to feel much worse than you did initially. When I took my first round of antibiotics, I was excited to think that I could possibly kill off the spirochetes that cause Lyme. I was very excited that there may be a “fix” for the terrible illness that plagues me. Little did I know that I was entering my own personal hell. I began to herx severely (a healing crisis) within two days of beginning my first round of antibiotic treatments. I thought I was going to die. Literally. I did not expect any of this! I seriously feared for my life. I now know that even one drop of a particular tincture can cause me to become violently ill. Lyme treatments can quickly become a nightmare, if you do not approach them with caution. Slow and steady is the name of the game. I learned this the hard way.
 I'm Still Trying To Find the balance between sick and deathly sick
  • Lyme is extremely difficult to treat. What works for one person, may not work for another. I innocently thought, “We have a plan. Now I can finally get better!” My treatments have consisted of a LOT of trial and error.  I have learned to introduce parts of a protocol one at a time. When I first started treatments, I took every single thing on the lengthy list provided to me by my doctor. I went from being sick to feeling like I was dying in a very short period of time. I introduced too much, too fast and my poor body just could not handle it. Now, I am six months in and still trying to find that balance between sick and deathly sick. But, I am in this for the long haul. I intend to conquer this nasty disease once and for all!
  • Detoxifying is just as important as treating. DETOX, DETOX, DETOX. Those first few months of treatments, I did not pay much attention to the toxins that were building up in my body. Before I knew it, I was in a full blown healing crisis. In a word I was completely, utterly miserable. If I had known about the importance of detoxifying, I would have been drinking a LOT more water. I would have taken many more Epsom salt baths to draw out those toxins. I would have incorporated a drainer to aid my system in ridding itself of those poisons. I would also have used dandelion root another detoxifying agent. I would have religiously DETOXED! But, no one told me. Detoxification is key to surviving Lyme treatments. Without it my body ends up being a cesspool of death.

Detoxification is the key to surviving Lyme treatments

  • Lyme treatments are often not covered by insurance companies. I am fortunate to have good insurance. But, it has not done me any good when it comes to treating my Late Stage Lyme Disease. If you plan to tackle Lyme Disease plan to spend your own hard earned money. Lyme treatments are very expensive. I am just beginning and yet I have already spent a fortune. It is scary, but unfortunately very true!
  • Chronic Late Stage Lyme Disease is not generally an acceptable or politically correct diagnosis in mainstream medicine. Once I had the answer of  a Lyme Disease diagnosis, I thought I would just continue on along the road to wellness quite easily. Wrong! I ended up in the emergency room with a terrible flare up of my costochondritis and GERD symptoms during the first weeks of my treatments, sincerely thinking I was having a heart attack. I  made the mistake of mentioning Lyme Disease and my treatments to the ER doctors and they literally laughed me out of the Emergency Room. They DO NOT believe it exists. Lyme is a disease that you can only mention to your actual Lyme doctor. That is, if you want to be taken seriously. Now, I know not to mention one word about it to my regular doctors. As far as they are concerned, I still have Fibromyalgia, CFS, Raynaud’s Disease etc. but certainly not Lyme. After all they believe Lyme is cured with a few weeks of antibiotics. Meanwhile, I am left to suffer in silence. Lyme is a very isolating illness.

Late Stage Lyme is not generally an acceptable diagnosis in mainstream medicine


  • Lyme literate medical doctors are difficult to find. I am fortunate that I only have to travel to a neighboring town to see my LLMD. (a.k.a. Lyme Literate Medical Doctor)  I try to safeguard him and his practice.  Many doctors have been forced to move or resign due to complications and accusations brought about by various medical boards. Many people have had to travel out of state to see their LLMD and sometimes even out of country! I will always be grateful that I finally found that one doctor who listened to me, who is willing to try and help!
If you are suffering from Lyme. I am so sorry for all that you face. You are not alone. It has been a real learning curve for me to finally understand the seriousness of it all. Understanding the difficulties that surround this diagnosis has been mind boggling to say the least. I wish you healing days ahead and strength for the journey. Heaven knows we need it!
If you would like to read more about my journey to diagnosis, click on the following links to visit posts about my Lyme story:
Disclaimer: I am not a medical doctor. Any opinions expressed on my blog are just that, my opinions. Please seek the advice of a qualified medical professional before undertaking any kind of treatment. I am not authorized to give any sort of medical advice. I am simply sharing my journey with those who are in similar situations.

8 Responses to 7 Things Someone Should Have Told Me Before My Lyme Disease Diagnosis

  1. Yes to all of these. SO wish I'd had this knowledge base going into the diagnosis.

  2. Valerie says:

    Dear Chronicallywhole,
    Thank you for your kind comment. I'm so glad you dropped by. Blessings, Valerie

  3. Oh how I love your writing! I have been pondering with wiring a similar post, as I SO wish I knew 15years ago what I know now. Wishing you all the best with your current treatment. 🙂 I am thankful to have "met" you, and look forward to following along with your journey to wellness. Blessings to you Lyme Warrior! Terry 🤗💚😘

  4. Valerie says:

    Dear Terry,
    Thank you so much for your kind comments and the well wishes. I wish the very same for you! You have been such a help to me with all of your wonderful writing and posts. I am so glad to have "met" you and look forward to a continuing friendship and joy for the journey.
    Blessings to you! Valerie xo

  5. Michele Hogg says:

    Very well said. My diagnosis came in 2011, 45 years after I was infected. At the time I felt that it was a "blessing" to finally have answers to a lifetime of serious health issues! I quickly learned that my "blessing was also a curse!" Wishing you all the best with your current treatment and thank you for sharing your thoughts about your journey to wellness.

  6. Valerie says:

    Dear Michele,
    Thank you so much! Wow! 45 years is a very long time. It took 18 years for me to find my diagnosis. I understand what you mean about it being a curse. On my worst days I often feel that these health problems will never end! I'm so glad to be able to share my journey.
    Blessings and well wishes, Valerie

  7. I have a friend or two with Lyme Disease. This is helpful for me in understand what they are going through. Thank you.
    Rabia @ The Liebers recently posted…HopeMy Profile

    • ValerieB says:

      Dear Rabia,
      Thank you so much for reading and your kind comment. So very sorry you have friends going through this as well, it is a terrible illness. Blessings, Valerie

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