If you follow me on Instagram, you know I’ve been dealing with some serious health issues, and what seems to be Lyme Disease. I say “seems to be” because I’ve entered into a very grey area of medicine, and no one really wants to confirm the diagnosis…yet. Even though I still have many questions to be answered, I want to share my story thus far, considering May is Lyme Disease Awareness month. Almost thirty days ago, I was struck with flu-like symptoms – extreme fatigue, chills, joint pain, headache, sore throat. I figured it was a viral infection or fibromyalgia flare, knowing the stress of our move probably weakened my immune system. The next day I developed extreme nausea and loss of appetite but still figured it was a weird virus that had to work itself out. Those symptoms continued off + on for a few days, until very suddenly, I developed extreme knee pain, to the point where I could barely walk (fyi I’ve never had knee or arthritic issues). It scared me so much that I went to urgent care, where I was informed my symptoms aligned with Lyme Disease.
I was told to watch for a bullseye, contact my primary care doctor, and be tested for it in 4-6 weeks (it usually takes that long for it to show up in your blood stream). Having minimal knowledge of Lyme Disease, I became immediately immersed online and began to educate myself. I saw my primary, and they agreed to test me based on my symptomology, even thought it was early, and I had no bite or bullseye that I knew of. While I waited for the results, my symptoms continued to get weirder and seemingly more specific to Lyme (to include scary neurologicial stuff). The test results came back – I was negative for Lyme according to the CDC. Here’s the kicker: the CDC does not consider someone positive unless all FIVE bands of testing are positive. I currently have two positive bands showing up, using the most standard test, the Western Blot. I now know, after reading How Can I Get Better, that this test was never intended for individual diagnosis. Meaning, it’s not sensitive enough – it does not pick up all strands of Lyme and related bacteria. In fact, over 80% of cases are missed by the negligent strict CDC standards, especially those with chronic Lyme.
Without delving into more technical facts and figures, the bottom line is this: I know my body, and I know I’m ill. I’m suffering from a highly polarizing and political condition, and I have a long road ahead of me. I’m so thankful for this community and the outpouring of love and support I’ve received via social media. In fact, because of that, I’ve been in touch with quite a few people with similar stories, and they’ve given me hope. They’ve helped me understand that I’ll have good days and bad. The good ones will make me question whether I’m truly sick at all, and the bad ones will scare the shit out of me (like yesterday, when I couldn’t stand up without intense vertigo, had double vision and numbness in my limbs, and could barely care for my kids). I’m waiting to be seen by a specialist, and have contacted a few alternative medicine doctors as well. I’m hoping to have more answers soon, or at least have a plan of attack. I’m continuing to arm myself with education about Lyme, and won’t stop until I get the help I need. Now more than ever, you have to be your own advocate. No one is going to care about your health and wellness as much as you do. Thanks for reading, and if you’d had Lyme, know someone that does, or suffer from a chronic illness, I hope you’ll share your story here.
It is so scary when we’re ill and we have little idea or confirmation of the cause. You’re so right in that we have to be our own advocates right now and I’m terrified of the state health insurance is in. I hope you find some answers and proactive ways of coping and dealing with your symptoms. Will be thinking of you xo.
absolutely, very scary Jenna. thank you and yes the health insurance situation is a nightmare, indeed…I appreciate your thoughts, thanks so much! xo
Susan, I am so sorry to hear you are suffering. I hope you find your healing path soon. I have no doubt you will. I suffered from a chronic, painful inflammatory illness for years with no answers. I also had some of your same symptoms. Finally, I found the medical medium – Anthony William. He has a blog and books that explain the symptoms you are having and causes of Lyme and other mystery illnesses doctors are unaware of at this point in time. His information has helped me heal. It is diet and supplement related and has saved the quality of my life. Let me know if you want to talk further. You will get through this and your spirit, perseverance and self love will get you there. My thoughts and prayers are with you.
wow, I had no idea Lauren – I’m so sorry you’ve been suffering as well! I didn’t want to complicate matters in this post, but I was diagnosed with fibromyalgia in 2014 and have suffered from awful (random) joint pain since 2012…this pain could very well be linked to these new symptoms I’m having – chronic Lyme, or some type of chronic inflammation, with this exacerbating it all. I will take a look at Anthony William’s book – thank you for sharing that valuable information! I’m already making changes to my diet to help assist in the healing process, but know I need to do more. I’m glad to hear that you’ve been able to have a better quality of life, that gives me so much hope! thank you so much for sharing. xo
Hi! I’m so sorry to hear that you’re suffering. I grew up in Downingtown, Pa and currently live in Wayne. I have had lymes and so has my son—both were caught early and thankfully treated with antibiotics. However, my dad got lymes about 2 years ago. It was so bad he had to quit work for a while. He did long/high doses of antibiotics and it make him sicker. We had SO many friends recommend Dr. Brody, a holistic doctor. After my dad trying so many regular doctors, he finally caved and went to Dr. Brody. It worked!!!! His symptoms went away and he’s been healthy ever since. We weren’t a family that typically went this route ;) and so he was very skeptical. Be warned: his office is a mess, the front desk kid is a bit of a ding-bat, but he’s an incredible lyme expert! Just passing it on in case you were interested. I know quite a few people who have gone to him for lymes. Everyone warns you about his “crazy”, but if you can get over that part, I think he’s a good doctor ;) Hope you feel better soon!
https://sites.google.com/a/thcassociation.com/www/contactus
Hi Heather, thank you so much for your comment! I’m sorry your family has struggled with it, but that is very valuable (local) information…I will absolutely look into Dr. Brody. I’m not the type that gravitates towards alternative medicine either, but I think that is going to change! Thank you again, I truly appreciate it.
So sorry to hear of your pain and struggles. I hope the littles will play quietly and amuse you to distraction.
thank you Cynthia – it helps that the kids are older now and they play very well together.
I will tell you that my symptoms have been aligned with Lyme but I don’t test positive for Lyme. Lyme disease is truly viral in origin- it was deemed this years and years ago when these cases started popping up in Lyme Connecticut. The first physicians on the scene characterized the disease as thus- a viral etiology. But they had nothing to offer the patients who were suffering so much. Therefore the medical field began using antibiotics, after recognizing that a select FEW who had the symptoms of Lyme were bit by a tick. The tick bite can TRIGGER the retrovirus within us to activate but often viral reactivation can occur without the tick bite. It can be from excess stress, moving, new paint in a house, radiation exposure like an x Ray or a plane ride. It is the straw that breaks the immune system’s back and the virus (Epstein barr) activated and grows. As it grows, all other retroviruses in that persons DNA can also activate. Babesia and bartonella are not the cause of Lyme- many of us have these organisms and are asymptomatic. I’ve been treating ONLY my Epstein Barr and shingles viruses and my symptoms are 90% better! No longer do I have twitching, numbness, tingling, or eye floaters. The depression has lifted (for which I was on a medication for 7 years prior to the Lyme symptoms hitting, which now I know was the beginning of the Epstein Barr activation, but my immune system had worked to keep it in check until it couldn’t keep up any longer.) I am not running yet like I used to, but I have full capacity to care for home, kids and my business. I am eternally grateful for a friend that shared with my this vital information- that Lyme symptoms are VIRAL in nature, before I went looking at antibiotics etc. I have a patient who is now in a wheelchair from
One round of antibiotics taken during viral activation. I could hav been her. I would love to share more of what I’ve learned and how I’ve gotten better. It isn’t easy, it has been a long and hard up and down road the past 16 months. But I am seeing such positive progress now, compared to my cohorts who have been sick for years. To know what it is, and what to do about it has given me peace in the midst of the trial and the faith knowing I will be well again. And you will too!!
Fascinating and very helpful information Karsen, thank you so much for taking the time to share. I’m glad you’ve found relief, and have read about much of what you mentioned, but you also presented a few new concepts for me to research! Hearing success stories gives me so much hope.