After many rounds of SIBO treatments, my naturopathic doctor pushed the pause button and suggested a possible underlying diagnosis that I did not want to hear: Lyme Disease. He said that I reminded him of other SIBO patients who ended up testing positive for Lyme Disease and/or other tick-borne infections. He recommended that I find a “Lyme-literate doctor” and get tested. After months of delays, I was finally diagnosed with Lyme Disease and a couple of co-infections.
Finding a Doctor
When it came to testing, the first challenge for me was finding another doctor. I had not stayed in one place for more than two months over the last year. My husband and I had made the decision to follow our dream of taking a traveling career break. We had wandered around the western U.S. for the last year, living off our savings while exploring our public lands. I nearly decided against it due to all my health problems. However, I ended up taking the plunge because life is short, and who knows whether I will ever be healthy again?
This odd lifestyle of moving around continuously has many challenges, which I will address in another post. One of the most difficult challenges turns out to be health care. Doctors and insurance companies expect their customers to live in one place most of the year. Even with the possibility of Skype and phone consultations, doctors need to see a patient in person at least once in a while.
To the East or West?
Since we were wrapping up our year of travels, we had to decide which “home” to choose in order for me to select a doctor. We had our official home in Riverside, California, our permanent address, the one every citizen must have for security and tax purposes. Then there was the home I grew up in back in Maryland. Perhaps I could find a doctor there and visit my dad now and then to see the doctor in person. Then there was Michael’s hometown of Red Bluff, California. It’s an inexpensive place to hang out, but not really known for Lyme-literate doctors. We were camped out on Pilot Hill, just east of Laramie, Wyoming, and we had no idea if we would be heading east or west on I-80.
In the end we chose the hectic, over-crowded, expensive southern California. I had spent 11 years in the Santa Barbara – Ventura area, and our official address was Riverside after all. More importantly I had read about a doctor in Los Angeles who was finding a connection between SIBO and Lyme Disease. His reviewers found him to be kind with a good sense of humor, on top of being a medical detective. This was exactly the type of doctor I was seeking. Unfortunately Dr. Rahbar of LA Integrative Gastroenterology was completely and totally booked for the next three months!
After chatting with a few of Dr. Rahbar’s patients on the SIBO Discussion Group on Facebook, I received a recommendation for another doctor, one who actually treats Lyme Disease. He had an opening within the next week! I took it! Michael and I headed west on I-80 and then south on I-15 and back into the chaos of southern California. We stayed in our former home county – Ventura County – and parked our home at the Mountain View RV Park in Santa Paula.
Concerns about a Lyme Diagnosis
Uncertainty about the possible Lyme diagnosis plagued me. I did not want to spend years going down the Lyme Disease rabbit hole after already spending years down the SIBO rabbit hole. I knew that there was a strong possibility I could test positive for Lyme Disease. I grew up in a rural part of Maryland, where I spent lots of time outdoors, and I recall several tick bites in my lifetime. However, I wanted to take a step back and consider ALL of the possible factors in my chronic illness with no bias for one particular diagnosis. I did not want to jump to the conclusion that Lyme caused all of my symptoms, as I had previously done with SIBO. As I recently told my SIBO buddy (a fellow SIBO sufferer and now good friend), “I want to do ALL THE TESTS and figure it ALL out NOW!” (That is, if money were no object!)
I was desperate for progress. When I am at least trying to make progress on my health, whether that involves experimenting with a new treatment or testing for possible causes, I find that I have hope. When progress grinds to a halt, I become negative and irritable. I cling on to any bit of progress with all my might for my own sanity and survival. Feeling hesitant about the possible diagnosis of Lyme Disease, I headed to my appointment with this Lyme-literate doctor for the sake of progress!
My Visit with a Lyme-Literate Doctor
My visit with this doctor was brief. Based on my symptoms and experience treating SIBO and hitting a wall, he was convinced that I had Lyme Disease and likely some co-infections. When I told him that I was a biologist and spent a lot of time outdoors, he seemed even more certain. I tried to explain that I wanted to consider ALL of the possible factors that may have contributed to my current health condition. However, he did not see the point in spending time or money on any other testing until I was tested for the Lyme bacteria.
His attitude only encouraged my suspicion. As they say, when “all you have is a hammer, everything looks like a nail.” I got the impression that since his specialty was Lyme Disease, everything looked like Lyme to him. Given all the bizarre symptoms that can be caused by Lyme, it’s easy to match this diagnosis to many patients’ symptoms.
The doctor recommended the DNA Connexions test that would identify the DNA of tick-borne bacteria in my urine if it were present. My first reaction to this test was more skepticism, especially since the test was not CDC-approved nor covered by any insurance companies. Was this a true test for Lyme?
If you’ve read anything about the diagnosis of chronic Lyme Disease, you know that controversy remains. This controversy causes many patients with real and debilitating symptoms to remain sick while being told that “it’s all in their heads.” I was one of these patients for many years. Doctors ran the routine blood work, and when they found nothing wrong, they began to view me as a mental case instead. Although I fully embrace the fact that the mind and body are connected, I knew that my illness did not begin in my head. I was happy and thriving in both my professional and personal lives before all my symptoms hit me. There are thousands more just like me.
The controversy over Lyme Disease caused me to approach the testing and diagnosis with some healthy skepticism and caution. However, I am not a member of the “head-in-the-sand” camp. I am not convinced by those who are in complete denial of the existence of chronic Lyme Disease. There are all kinds of chronic infections. Why not Lyme?!
Logic thought should lead us to believe that a chronic infection from ticks could be just as possible as a chronic infection from, let’s say, chicken pox. Let’s take a look at chicken pox. In this case, even the CDC explains that the chicken pox virus can remain in our bodies after initial infection. In some people, their immune systems keep it in check for a lifetime, while in others, the virus causes what we call “shingles” later in life.
My logical and science-trained mind convinced me to move forward with the test. If the DNA of tick-borne bacteria were in my urine, then they could certainly be at least partially responsible for my never-ending sickness.
On top of my logic, I had past experience to bolster my decision. I had broken down the barriers of the skeptical conventional medical community before and made progress. My gut problems were caused by fermenting bacteria creating methane, not for lack of fiber in my diet! The pain in my feet were improved when I finally busted out of the mainstream and put spacers between my toes and began wearing minimalist shoes!
Before taking a urine sample for the DNA Connexions test, my doctor recommended either vigorous exercise or a massage. These actions were supposed to loosen at least some of the potential bacteria lodged in my tissues. This way they would be out floating around in my bloodstream and consequently come out in my urine.
I eliminated all of the urine in my bladder and then took a hike at Arroyo Verde Park in Ventura, where I used to hike regularly after workdays. In my current condition, I am not all that energetic, but I dragged myself up and down the hills and worked up a sweat. About 30 minutes later, I took a urine sample, placed it in the Fed-Ex package, and shipped it to the lab.
Diagnosis and Treatment
One month later in a brief phone consultation with the Lyme-literate doctor, I learned that I am carrying the DNA of Borrelia burgdorferi Osp C (Lyme), Babesia duncani, and Bartonella henselae-NPS. The doctor explained that he preferred to treat with herbs initially, and then if I did not improve adequately, he would consider treating me with antibiotics (the pharmaceutical kind).
My herbal cocktail would consist of Samento, Banderol, and Stevia by Nutramedix for Lyme, A-Bab for Babesia, and A-Bart for Bartonella, both produced by Byron White Formulas. I was told to work my way up to a full dose slowly, increasing by one drop of the herbs each day. My full dose consists of 30 drops of each of the Lyme herbs twice per day, and 10 drops each of the herbs for the co-infections, also twice per day. The total monthly cost of this protocol: approximately $300. That brings my monthly herb and supplement bill to $600!
The doctor said that I should experience about a ten percent improvement each month. I spent one month working my way up to the full dose, and I have been taking the full dose for several months now. So far, I have not experienced any improvement. I know that herbs take a lot longer than pharmaceuticals, especially for chronic infections. I’ve been patient. However, at this point, I am starting to wonder how long I am willing to wait and hope for progress given the cost. At what point do I put this money towards further testing or a different treatment option instead?
I have a follow-up appointment with the doctor to ask this very question. In the meantime, I have read a book that every patient with chronic illness of unknown origin should read: Dr. Horowitz’s Why Can’t I Get Better? The moral of this story is that most chronic illness is caused by multiple factors. Until a patient identifies and pulls each of those nails out of her foot, she will not get better. The book describes many factors that this doctor has repeatedly found affecting his patients as well as the tests required to diagnose these factors.
I am fully convinced once again that I NEED ALL THE TESTS NOW! Well, at least all the tests for factors that are likely for me. Why should I waste money on treatments, like I already have for two years with the SIBO diagnosis, until I know everything I need to be treating?
To be continued…
Awww. This is such a great summary, but I can so easily read your frustration. I could give you platitudes by saying, be patient, and you will know in time, but I know that you might not like that. And you WILL get better, but I hope that it is sooner rather than later.
Hugs, and let me know if you come back this way to see the doctor in person.
Thank you, Ruchita. I want to say, “I’ve BEEN PATIENT!!,” but that wouldn’t be very patient of me! Yes, I have had to learn to be patient over and over again. I have cycled through the emotional stages many times. Actually, the fact that I am finally taking the time to publish this post means that I’m coming around again. Thank you for reading, and I will definitely let you know if we end up back in Ventura.
I’m glad you finally got a diagnosis. I have the same trio of infections and I totally understand what you’re dealing with. If you would like to talk I’m more than willing to discuss treatment options or even give you my doctors information or anything for that matter. It does take time though, hang in there, I promise it does get better. Look us up next time you’re in Colorado.
Thank you, Kristi. Talking with someone who has been through it is always helpful. Success stories especially help me to keep going. I’m so glad that you are finally making lots of progress. I know that you’ve been at it for a long time.
I really appreciate your offer and will try to get in touch soon. We’ll definitely visit next time we are in Colorado!
Been enjoying your photos and travel journey.. but your health journey is the one that made me comment. Please consider looking back to doctors in your home state of Maryland.. my dear friend with Lyme disease has been successfully diagnosed, treated, supported with PT and diet over the last two years at John’s Hopkins. They are one of the main research and treatment hospitals in the US. It saved her life both physically and mentally. Good luck on this journey..
Thanks for the tip, Mary Jo. I will look into docs in Maryland. It always gives me hope to hear success stories, so thanks for that too!
I was battling with Lyme Disease for 6 years. I recently found a herbal treatments to be taken along with antibiotics. It’s a very horrible disease and you need to fight it using all the possible help available. Best Health Herbal Centre have the most powerful Lyme disease herbal Formula. I only used the Lyme disease herbal formula for 8 weeks, all the arthritis symptoms and the joint pain disappeared. i just confirmed last week that am now Lyme disease free. During this period i ate Lots of yogurt and Also exercise everyday. Thanks to Best Health Herbal Centre their marvelous work..Visit their homepage for more info..
I’m glad to hear that you found a solution that worked for you! Thanks for giving me hope 🙂
I was diagnosed with Lyme disease 5 years ago and was taking Antibiotics and Nonsteroidal anti-Inflammatory drug which seemed to help. However, I still suffer from some of the symptoms. My symptoms have always been chronic fatigue, joint pain, and even neurological problems in controlling hand and leg movements. I am a 54 year old female. the Antibiotics wasn’t really working and I could not tolerate them for long due to severe side effects, so this year our family doctor started me on Natural Herbal Gardens Lyme disease Herbal mixture, We ordered their Lyme disease herbal treatment after reading alot of positive reviews, i am happy to report with the help of Natural Herbal Garden natural herbs I have been able to reverse my symptoms using herbs, my symptoms totally declined over a 8 weeks use of the Natural Herbal Gardens Lyme disease herbal mixture. My Lyme disease is totally reversed! Their official web page is naturalherbalgardens . c o m this is a herbal store that will be leaving it’s footprint in this world. I’m 54 and have never been this healthier
Thanks for the tip! I’m happy to hear that you are feeling healthy again. Hopefully I’ll find my way there someday.
My heart goes out to you. I cleared SIBO in Jan 2018, and had a pretty good head, but devolved again late 2017 and I’m treating again. I’ve read a number of your posts and am glad you finally found the Lyme connection. I’ve wondered the same but haven’t pulled that thread yet. I haven’t read all of your posts, so forgive me if you already know about these next two things that I’ve found helpful. First, carminative tea has helped me immensely with bloat. (I bloat up, not out, which forces my organs into my chest. Hiatal hernia, headache, etc.) You can get the simple recipe by googling “the SIBO doctor carminative tea” and you’ll find Dr. Nirala Jacobi’s video. Second, I swear I relapsed because I got lax on prokinetics, I began cbd oil for body pain (a subset of people get slowed digestion), and I stopped taking l. reuteri DSM 17938 (sold as BioGaia drops, of more conveniently (like at Target) as Gerber baby drops in a product called “Soothe.” At least one study showed that it can protect against methane overgrowth, and I want to say it has been used to reduce methane. (I’m stuck tapping this into this comment, otherwise I’d do some googling to verify.) On prokinetic, I don’t know why patients are told to wait until after treatment to introduce prokinetics. I will never be off of them again! I take 1 Motility Activator cap with every meal, as well as 30 drops of Iberogast in a bit of water. (Also, Bitters and digestive enzymes with HCL.) At night, I take 3 MotilPro caps on an empty stomach. I could talk about this shizz forever, and I realize these would only help with the SIBO side of your efforts. Anyway, I’m sending loads of good thoughts. I’m in the Palm Springs area if you ever drive through here. (Since you’re also in Riverside County.)
Hi Jared. Thanks for sharing your story. I have continued to uncover more possible factors in my illness. I just have not had the energy or mental capacity to write about it since I have been so consumed by symptoms and new treatments and more new symptoms. I hope to start writing again soon and share more of my story. In the meantime, I will share a general lesson I have learned: it’s really all about toxic burden. The body can keep a Lyme infection in check for a lifetime, but add a toxic mold exposure, some other infection, or who knows what other chemicals to the body, and the immune system gets overwhelmed. Then these toxins are able to do damage, and the immune system gets stuck in emergency response mode. If you haven’t already, you might want to look into Chronic Inflammatory Response Syndrome (CIRS) for yourself. Skip the antibiotics for Lyme and co-infections (something I tried for about 6 months), and go straight to detoxification and immune system support. Mold is definitely something to consider.
On the topic of SIBO, I had to Google “carminative tea.” Although I have never tried a combination tea like that, I have certainly benefited from some of those herbs. I drink a lot of peppermint and ginger tea. I also recently started taking bitters before meals, and I believe they have helped tremendously. I never had any improvements with betaine HCl or digestive enzymes, but the bitters help. I also take the BioGaia baby drops with L. reuteri. I don’t want to be without them, because they do reduce methane in my experience. I think I agree about the pro kinetics. The only one that I believe helped me was Resolor. I took it for about 6 months after my last elemental diet, and I was doing pretty well. Then I quit, and it wasn’t long before the methane symptoms returned – bloating that pushes my stomach up, causing reflux, and constipation. L. reuteri really helped with that. I’m still stuck on a low Fodmap diet for sure.
Thank you also for sending good thoughts my way. Right back at ya! So many people experience chronic illness these days. I’m on a mission to solve my own illness, and I want to share what I learn in case it helps others like yourself. I’ll let you know if we are ever in the Palm Springs area. We are currently in northern California. Wish you all the best!