My Lyme Story
By Mike Gilhousen
We live in an area with many ticks. So I had doxycycline, the recommended antibiotic for Lyme, at my house just in case. In March, 2017 I started taking doxy after I pulled an adult female deer tick out of my elbow. It was on me less than 2 hours, however, it was dug in deep and did not come out easily.
Despite early antibiotic treatment (lasting 5 weeks), I became sick (fever, chills, body and headache, fatigue) 48 hours after the bite. I had not been sick for a few years. This sickness felt like nothing I had ever experienced. I could not get out of bed for two days. Once this intense flu-like illness cleared, I still did not feel right.
The bite site turned yellow, raised and painful, about the size of a quarter. It was very bothersome, and a month later turned black and necrotic. After 3 months I had my doctor cut it off my arm because I could not take the itchy, painful constant reminder of the bite.
By this time I had started treatment with a Lyme expert consisting of anti-microbial herbs and specific supplements. I continued to sink deeper, with intense fatigue, confusion, brain fog, migrating joint pain, gut pain and terrible constant headache, some of which were worse than a migraine.
I was having great difficulty trying to work. Basic communication was also becoming very challenging.
November 2017 marked the beginning of debilitating anxiety. It was taking all of the little energy I had just to remain calm. Early December I mentally collapsed and believed suicide was the way out. This was the lowest point. As is the case with Lyme (ups and downs) I started to feel some better middle of December. During the couple weeks of reduced symptoms I prepared myself for a long battle.
The first 4 months of 2018 I started on heavy oral antibiotic treatments. I pulsed different intra-cellular antibiotics each month, some in combination, always targeting phases of the moon. I also treated Babesia (a protozoa common with Lyme) with the standard anti-malaria medications. In addition, I attempted to target the Bartonella bacteria with specific antibiotics. With all this I did not feel any better. In fact, now I felt worse. In my mind I knew my guts were destroyed after the antibiotics, along with a major portion of my immune system. I made a promise I would not take any more antibiotics, no matter what.
The rest of 2018 was rebuilding gut health, protecting my brain and trying not to slide deeper into depression. I had support from my family. I visited two other health practitioners who had history of good results treating others with chronic Lyme. I was taking supplements all day long, eating a clean diet and resting most of the time. It felt like everything I was doing was not helping. Although, meditation practice and sitting in an infrared sauna did allow a brief escape from suffering.
It was in late 2018 I started experiencing intense neuropathy in my legs that was slowly progressing. I could not feel my legs from the knees down, except for intense bouts of major swelling and pain. At this point, based on my daily research over the last 20 months, I thought this was the beginning of the end for me. I consulted a medical doctor who has treated chronic Lyme in Wisconsin for the last 15+ years who told me the leg symptoms would likely spread through my body and become permanent. Intravenous antibiotics were recommended.
I felt like I had one last chance to get on top of this illness. I looked at my research, specifically a treatment wish list I had created in late 2017. On the top of my wish list was a treatment developed in Germany 20 years ago and was the ONLY treatment touted to eradicate the Lyme bacteria, not just send it into hiding. I found a hospital in Mexico (the only hospital outside of Germany) that was performing whole body hyperthermia with sedation, to 107 degrees F. This hospital also had 5 additional treatments on my wish list as part of their chronic Lyme program. Interesting that my top choices for treatment are not allowed in this country. Not acceptable by our CDC or medical societies. I had no better options, so I went for it.
By now we were essentially broke financially, mentally and emotionally. I am now saying we, because my bride also took this ride of despair and financial ruin with me. In addition, my two kids had to watch their Dad progressively decline physically and emotionally. They were stressed beyond what I could comprehend at that time. I had no connection with them anymore.
For my family, for my bride and for me I had to try this expensive treatment program. It worked! The two hyperthermia treatments, along with several other supportive treatments cured the infection. Now, we are in the long process of healing from the chronic stress, reestablishing relationships and pulling ourselves out of the hole that was created by 2 years of chronic illness. An illness that is not supported by the medical establishment in the U.S..
So far, so good.
What would I do different?
I would not have lost the tick that bit me. Saving the tick and getting it tested is very important, especially if you get sick. Testing for microbes in ticks is much easier than in living people.
I would have had the bite site that I had removed tested. Also easier to test a tissue sample than blood.
I would not have wasted a lot of money by going to Mayo Clinic. The infectious disease doctor I saw dismissed me after a 5 minute talk. She told me I was not sick and that I have psychological problems. She did not even look at my history. She knew what she was going to do before I even showed up for the appointment. Check on-line if you don’t believe me. Thousands of very sick people like me are dismissed because Mayo strictly follows the recommendations of the CDC and IDSA, which state that Lyme is an acute infection not lasting more than a month and is 100% cured with doxycycline.