Tuesday, September 22, 2015

Lyme (My Journey)

I would like to start out by telling you a little about myself. I live in Michigan with my two beautiful girls and supportive husband. I was diagnosed with Lyme in the summer of 2014 at 38 years old. I wanted to create a Lyme blog in hopes of maybe helping someone while I try to get better as well!  I ended up becoming very sick in January 2014 and I don't remember when or how I was infected with Lyme disease. When I became sick last year, it all started with my knees hurting and then I began getting an intense pain in my lower back and neck. In the past I always had some mild joint pain, but I always thought it was from when I was a waitress in college. At first I thought maybe I hurt my muscles in my knees so I went to my doctors. She told me it was because my knees went somewhat inward and gave me numbing lotion and sent me to a physical therapist. This doctor wanted to give me anti-depressants and Xanax. It never dawned on her to test me for Lyme or that any of symptoms could be Lyme related. She just looked at me like it was just the structure of my knees that was causing the pain and that I just had a mental issue. Then I started losing the ability to walk. So I went to physical therapist and regained some strength in my knees and legs. I was confused why my knees and my joints began to hurt to a point of me not being able to walk. 

Now my teeth began to hurt and a root canal I had began to throb with sharp shooting pains. I decided to get it doubled root canal, but it didn't help eliminate the pain. They did give me antibiotics after the procedure, so that started me on treatment before I knew I had Lyme.  I just felt my body shutting down and falling apart. I really thought and felt I was dying and no one knew why. I could barely eat and I was losing weight very quickly. I was already at a normal weight so I couldn't stand to lose too much more weight. My symptoms included my eyes burning, anxiety, depression, neck pain, back pain, knee pain, joint pain, light sensitivity, inability to walk normally, tremors, low blood sugar, tremors, teeth pain, migraines, fatigue, and insomnia.  

My sister was diagnose with Lyme 3 years prior and told me to get tested to make sure I didn't have Lyme. Thank god my sister helped me down the right path towards testing and treatment. I didn't know a lot about Lyme besides seeing my sister suffering from it and that you get it from being bit by a tick. Then I tried to get an appointment with my sister's doctor who was an immunologist who was treating her Lyme, but they couldn't get me an appointment until about month. So I was taking the antibiotics for my tooth and feeling only slightly better. 

Then I felt my mind was starting to shut down. I looked at my husband one day and I said I can't take care of our toddler, at the time I was a stay at home mother. We began to argue and I just couldn't articulate my thoughts and I began to stutter.  It was like my mind wouldn't work. I was having terrible anxiety and became depressed. So I took my sister's advice and I went to her doctor to have her doctor test me.  She also tested me for other things like h pylori and food allergies. It came back that I have gluten, dairy, sugar, and cocoa intolerance. She did find h pylori in my stomach so they started treating me with antibiotics. This doctor had a MRI done on my knees and it came back normal.  At this point I was a 38 year old healthy woman who began walking with a cane and I was a nervous wreck. After a few weeks, the nurse called me and said only one band was showing, so I didn't have Lyme disease. I knew something was wrong with me, but with a negative Lyme result, I just didn't know what it was. I felt like I was in a tunnel and my world was closing in on me. I called my mom and said I feel I can't think and now I can barley walk or drive a car. So we end up going to the emergency room. I tell them how I felt and they give me a Valium and told me see my regular doctor when they resumed their regular business hours. I felt I was losing my will to live because I could barely walk, talk, read, or write. It was one the scariest times in my life.  

After weeks of suffering I finally saw the immunologist and I tell him about my negative Lyme test. He decided to test me for Q fever, candida, and check my complete blood count. He said just because your Lyme test came back negative doesn't mean you don't have it. I tell him I don't remember being bit by a tick and he explains to me that I can get it from a mosquito, tick, spider, birth, or as an S.T.D.. I never knew all the ways I could of gotten Lyme, but never needed a reason to until I got sick. He explains to me that I can take a more expensive test, Lyme Multi-peptide IgM Elisa Assay Test that would cost $450 to rule out whether I have it or not. I really wanted to know either way so I paid for the test. It came back that I had Lyme and all the co infections. I also had Q fever too. I found out about the Q fever before my Lyme results came back so he started treating me with antibiotics for that. He hands me my Lyme results and I started to cry. I was so sad to know that I have this horrible disease that I have seen my sister suffer with for years. Now I knew why I felt was so terrible. This bacteria definitely went to my brain, which was causing all the anxiety and depression. I was baffled since I didn't remember being bit by a tick or having a bulls eye rash. I ended up doing one Vitamin C IV and I got the worst headache from it. He tested me with a C4a test and mine was over 15,000 and it should be 2,800 or lower. The C4a test shows you are fighting an infection and have inflammation in your body. 

My Lyme Multi-peptide IgM Elisa Assay Test Results

The Top Black bar is my results showing I'm out of range with the bacteria.

The immunologist started me on doxycycline and minocycline. I wasn't so sick that I needed to an IV like my sister because I think I started on antibiotics soon after my severe symptoms started. I was seeing a chiropractor at the time and he gave me a detox kit right before I knew I had Lyme. It was called ortho molecular core restore that you can buy on Amazon. Ortho Molecular - Core Restore BT Program - 7 Day Kit I herxed like crazy when I took it, but it helped me regain some strength in my legs. At the time I didn't know what herxing was or what that painful sensation was in my body. My sister told me that it was called herxing and I probably had Lyme. Herxheimer Reaction is often referred to as herxing. Herxing is when dead bacteria release their endotoxins into the blood and tissues faster than the body can handle it. If you suffer from Lyme than more than likely you will experience herxing sometime during your treatment. The doxycycline made me so sick that I felt like I was going to pass out from being so weak. I could barely sleep and I had terrible anxiety. I felt I was living in a permanent nightmare. The doctor and my sister kept reminding me that It was marathon and not a sprint. I wanted to be better in a few days, but this was going to take months before I would see improvement. 

My mom had to come over and help me with kids and clean up around my house. I felt like I had the flu everyday and I just wanted to give up. I knew I had to fight for my kids even though I want to throw in the towel. At the time my children were 7 and 2 years old. I had to place my toddler in full time daycare after having summer babysitters so I could get rest and go to doctor appointments and physical therapy. I could barely take care of myself let alone my kids and I felt so much guilt over it. My kids needed me so I had to get better and there would be times I would over do treatment.  I ended up doing a sauna blanket and a herb suppository and tinctures in one day. I felt like I was going to pass out after doing that concoction. I began to realize that I had to slow it down and pace myself. I began to take my health very seriously and I started eating healthier. 

I wanted to be better so bad that I went to another doctor about an hour from house who has treated Lyme patients. He tested me for Lyme with a IGenex test and the test came back positive. He tested me for mycoplasma pneumonia, cbc, my hormones, candida, vitamin D, food allergies, Lyme, and heavy metals. It came back that I had a positive Lyme test, candida, food allergies, and a little bit of heavy metals in my system. He started me on a variety of vitamins and I took the antibiotics from the other doctor. I could barely take the vitamins because it would be give such bad headaches. He tested me with a CD 57 test and it came back border line. After a few months of seeing this new doctor I decided to only see the immunologist who was only 20 minutes from my house. 
IGenex Test Results

It's now the fall of 2015. I still have good and bad moments during the day, but I have improved a great deal in comparison to a year ago. I stopped the antibiotics due to it causing pain in my stomach. I take probiotics, vital plan https://vitalplan.com/conditions/lyme-disease vitamins, red root tincture Herb Pharm Red Root Extract for Cleansing and Detoxifying - 1 Ounce, and eating healthier.  I do the LDI (Low Dose Allergy Immunotherapy) which is a shot in the arm or can be taken in liquid form under the tongue. LDI is an effective procedure for relief reactions to infectious based immune reactions, which includes Lyme. I have tried many other things along this journey as well. I have tried a sauna blanket, rife machine, herbs, vitamins, tinctures, Epsom salt baths and immune active pills http://immuneactive.com/. 
My sister told me this was a rich man's disease and she was right. We had spent thousands of dollars on my doctor visits and treatments. This illness ate up all our health savings. I began to research Lyme and educate myself as much as my mind would allow me. I read Why Can't I Get Better? Solving the Mystery of Lyme and Chronic DiseaseSuffered Long Enough: A Physician's Journey of Overcoming Fibromyalgia, Chronic Fatigue, & Lyme.  

There are 300,000 new cases in the US each year. Those are only the cases that are being diagnosed. I just can't believe how many doctors don't test for it or misdiagnose people. This disease is painful and frustrating. Both doctors I saw said that some doctors won't treat Lyme patients in the fear of losing their license and they are one of the rare ones that will treat Lyme with long term antibiotics. I hope this blog helps and educates someone with Lyme.  I have individual posts concentrating on different subjects pertaining to Lyme disease. I wish all doctors were aware of Lyme and how it's on the rise. I wish there were better test and just because you have a negative result, it doesn't mean you don't have Lyme! Contracting Lyme disease is as easy as going outside in your backyard. Never in a million years would I of thought I would have Lyme disease! Feel Free to post any helpful comments!


  1. I am so proud of you for sharing your story. I know this will help many.

  2. Thanks for sharing about your Lyme journey. It certainly is not a sprint, more like a marathon. I was diagnosed with Lyme 8 months ago. My daughter and two grsndchildren also have it. It has been a real struggle in so msny ways. Financially it is a nightmare. They call it a rich mans disease for a reason. I am feeling much better with treatment. I have been seeing a naturepathic doctor in seattle area. I pray for you and I thank you for the crochet patterns. I had to take a leave of absence from my job so I have time to crochet while I am resting! Thanks again.

  3. Thanks! It's a difficult disease for sure. I've tried about everything to get better so I know what you mean! Hope you and your family get well and stay that way!