Living in the Lyme Maze can be frightening, confusing and overwhelming. My family and I have spent since 2009 trying to find a cure for Lyme.
Our whole family has Lyme Disease, Bartonella, Babesia and maybe a host of other co-infections that were never diagnosed. We all had many similar symptoms with the exception of one of my children who had severe psychiatric symptoms.
Many Lymies get to the point where they are not progressing in treatment and their doctors aren’t sure what else to do.
The burden becomes almost too much to bear when your doctors throw up their hands and say, “I can’t help you”.
Some may ask why God allowed your whole family to get sick in the first place? Or why didn’t God bring the answers sooner? Why hasn’t He just healed you?
He very well could have if He wanted to but He hasn’t and I rest in that. I know that His ways are not my ways. I know that He loves us even if He chooses to never bring about complete healing.
If I had a choice, of course, I would rather never suffer or allow my children to suffer, but the longer I’m a Mom the more I realize that we learn best when we have to put forth the effort and work through the struggle.
Without this trial, I would not have spent the number of hours that I have seeking out a treatment protocol that will work for my family. I wouldn’t have researched like I did, I wouldn’t be able to sympathize with others and I certainly would have no need to pray about it.
I see the wisdom now in the journey, in the struggle, and in the suffering.
At that moment when no one else knew the answers and everyone had thrown up their hands saying, “I don’t know what else to do, you’re on your own”, I ran to the one who fearfully and wonderfully made us. I ran to the one who wasn’t sleeping when we all got sick with Lyme disease and who isn’t sleeping now.
God’s most recent answer was way out of my comfort zone. It was something new, something that I didn’t understand and had never studied. It was something that I had heard of but didn’t believe in. Something that I needed to completely trust the Lord with because He so clearly led us to it.
We were recommended a doctor who was getting people better. He was helping Lyme patients but also many others with a variety of illnesses. He tests through auricular testing and uses his own line of homeopathic remedies to treat many different symptoms and illnesses.
We noticed a dramatic difference with our daughter after only 9 weeks. It was a miracle to us because everything we had tried for her didn’t work and most of it made her symptoms unbearably worse.
We were desperate for answers and help for her because she was the most severely affected by tick-borne diseases in our home. If we didn’t find help we weren’t sure what we would do.
Treating Lyme can be like running through a maze. There are so many different components to the disease itself. There are different treatment protocols some using medications like antibiotics or anti-malarials, some using herbal antibiotics and some homeopathic or other alternative treatment. There are specialty labs, specialty clinics and specialized medications.
Everything about treating Lyme disease is outrageously expensive and not covered by insurance. It’s like the doctors know that we are desperate to get better and because of that desperation we’ll pay anything and try anything regardless of whether anyone is getting better.
This prevents many people from even wanting to enter into the maze. It’s too confusing, doctors don’t believe in chronic Lyme, the tests are inaccurate and if you did know that you had it, then what?
My husband and I decided long ago that we weren’t going to run from doctor to doctor, paying out of pocket as we go, trying to find the latest and greatest cure. We decided to wait, to pray and to trust God for direction and provision.
We weren’t as sick or desperate as so many Lyme patients can be. We didn’t require hospitalization except for minor emergency room visits, we didn’t get treated with IV antibiotics even though we should have initially. We were not paralyzed or dying and so we could wait on the Lord.
Even so, it hasn’t been easy watching my children in pain or missing out on huge parts of their childhood. I can thank God that my husband has rarely missed a day of work. It’s heartbreaking to hear stories of lost jobs and homes due to this illness.
The world of Lyme disease and its treatments are a maze, especially the longer you have it. Wading through the testing, treatment options, side effects, and the symptoms can be confusing and overwhelming.
This past year I found that I haven’t really thought too much about Lyme or what treatment we should seek out next. I haven’t had to spend hours upon hours reading to figure out what it is we’re missing.
Our new doctor has shown us results and I am confident that he will be able to help us all overcome this frustrating disease. Even if he doesn’t get us 100% better, I’m thankful for being off harsh medications for now and being able to live a life that is not paralyzed by a disease that’s so complicated.
If you find yourself entering into the Lyme Maze don’t run it alone. Look for help from those who understand it and aren’t out just to take your money.
Most importantly seek wisdom from above. God is faithful to answer but remember, sometimes you will need to wait patiently upon the Lord.
I found your blog today by doing my usual Lyme research for help. My entire family of 5 also has Lyme Disease and we all have it to varying degrees along with multiple co-infections.. Unlike you, we ran from doctor to doctor and we are near broke. I pray every day seeking guidance and I sometimes feel lost. No one…not even family nor doctors understand. I hope your family continues to heal. When I hear of other families living this nightmare, my heart breaks. Good luck to you and thank you for your blog. Please update your progress I will be happy to follow along and see what worked for you,
Hi Lisa, it’s nice to meet you. I’m always sad to hear of other families dealing with Lyme. My husband and children are doing very well but I think as the caregiver it’s taking me much longer. I had periods of well-being but after our move 1 1/2 years ago I’ve been dealing with a relapse which coincided with the kids doing better. I have updates throughout my blog. You can use the search bar and type in “My Story” or “Living with Lyme” and those posts will show up. We have found our greatest healing through nutrition and homeopathy. xoxo Tricia
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Mike, you're correct. According to the ILADS, there are many vectors which can transmit Lyme and the co-infections that typically are transmitted with Lyme. Dr. Horowitz describes "Lyme" as Multi-systemic and will refer to an infection as a vector-borne infection rather than tick. Thank you for your comment.
There seems to be still a lot unidentified about Lyme's illness. Lyme's is due to a bacteria borrelia burgdorferi passed on by certain contaminated clicks. Generally, a scary bug that burrows into your epidermis. Some say that the only clicks that bring the disease are ones that like the black-tailed deer or the CDC says the black-legged clicks. I would just think that any mark could bring illness and take safety measures. crossword puzzle
I would say completely gone. She is doing great! Occasionally with the stress of exams she will have a tiny bit of OCD but not bad and it never lasts.
How is ur child's psychiatric problems?
You guys really have been on an intricate and challenging journey, Tricia! Grateful that God has been the Great Physician to each of you and that the current doctor has been such a blessing. Believing that God will bring complete healing to each and every family member!