I found it incredibly useful to read other Lyme stories so here is ours in the hopes that it may help others. I've learned that Lyme patients and families pay it forward and this is my effort to the cause. There is a large network of big-hearted Lyme patients and caregivers out there who are willing to answer questions, discuss what's worked for them, how to alleviate symptoms, recommend practitioners, lend support and hold the hands of those new to this journey.
Our Lyme story officially began October 2015 but like so many others, it really began a few years ago with an undiagnosed case of Lyme in our young teen son. We are a family of four living along the mid-Atlantic region of the United States in a fairly large metropolitan area. One of our two teens is a regular camper and we all spend time out in nature throughout the year. Our neighborhood abuts a national park where deer roam freely and even pass through our streets. We had a dog for many years and often pulled ticks off him. There are many opportunities for tick bites in our lives.
Nevertheless Lyme disease was honestly never on our radar despite occasional news stories and even our own personal experiences with it. In fact the only way it would have been is if our pediatrician and internist spoke to us annually about the seriousness of it at physicals. Not that we didn't have direct experience with Lyme - we did - Dad had the classic bulls eye at least 2 times and got on antibiotics immediately. His cases were resolved with the initial treatments. Family members in Massachusetts also successfully treated Lyme with immediate antibiotic therapy because they noticed their symptoms right away and got in to their doctors. Plus Massachusetts is a hotbed of Lyme and many doctors are aware of the initial symptoms and need for treatment.
Even though we knew some basics about Lyme, had even taken antibiotics for it, we had no knowledge of the long term issues caused by missing it nor that tick co-infections and re-infections are also possible. Our son never had the classic bulls eye like other family members did nor did we see any ticks. Instead, he had a variety of symptoms that came and went for almost 1.5 years before we went in for the second time with a swollen knee and insisted on blood work before being sent to the orthopedist. Finally after that blood work we had an answer - Lyme disease.
After his diagnosis and while he was so sick during his month of standard antibiotic treatment in late November/December of 2015, he and I worked as medical detectives, piecing his symptom history, school absences and outdoor experiences together until we figured out when he was bit. Both of us suspect he initially may have been bitten about 3 years ago but his immune system was able to keep it in check and thus his symptoms were minimal with the most obvious being a lack of appetite and new food aversions. However, in October 2014 he was bit on a caving trip in Pennsylvania and that was his personal tipping point which started a cascade of new and puzzling symptoms.
He came home and immediately exhibited flu symptoms including a headache followed by extreme exhaustion and a fever. Unfortunately I assumed it was the same fever that happened to be going around his school at that time. A few months later he complained of a very stiff neck and then a sudden and complete allergy to all dairy products (cow-based) followed. When I mentioned the sudden dairy allergy at his physical that spring, the doctor brushed it off saying no one just gets a dairy allergy out of nowhere.
Throughout winter he had weeks of fever and chronic fatigue as well as a lack of hunger for days on end and picky eating when he did eat. In April just a week or two after his physical, his knee swelled again for no apparent reason. We are not ones to run to the doctor for every ache and pain but we did go for this. I explained he'd had fever flus all winter and now this swelling and that I felt he had some kind of infection. We were told it was not an infection, probably just a lingering virus and to go to an orthopedist if the swelling didn't go down. He didn't complain again but the fever flus continued through June and then for the most part things settled down for the summer, although we discussed that he may need a visit to a nutritionist as we were concerned about his jagged eating patterns. However, he kept growing and was up to 6 feet by the end of summer so evidently he was doing okay and we decided to let it go for the time being.
Symptoms started back up in the fall. I was driving him to a game in September and noticed his breathing didn't sound normal. I asked him and he said he felt like he didn't get as much oxygen as other kids did but he wasn't sure why. However, he was playing a fall sport and training hard with no problems at all so I let it go. By October 2015 (on the exact dates he was bit in 2014 and this is common) he was sick again with a fever flu and then a week or two later his knee swelled again, even larger this time. I also noticed his upper body was twitching but he's a joker, not a complainer and brushed it off when I asked.
Meanwhile, I did a google search and found 3 main possibilities for swollen joints with no pain: Lyme, cancer or a rare form of juvenile arthritis. Those were the tests I requested and the doctor agreed it was time to follow through on some blood work before a visit to an orthopedist. His Lyme tests came back very positive and he began a treatment of 100 mg of doxycycline twice a day for 30 days. We were told sometimes a second month was needed and that the knee swelling may last for several months beyond treatment. That was it - the rest was up for us to discover ourselves.
During treatment, his knee got so big we called the pediatrician who didn't even want to see him and said to take him to an orthopedist. What a waste of time that was - the doctor took x-rays and confirmed there was no damage. He didn't want to drain the knee until after our son had seen an infectious disease doctor. After research and attempts to find a mainstream infectious disease doctor willing to consider co-infections, including a disappointing call to our local children's hospital, I moved on to finding an LLMD, per the recommendation of other local Lyme parents on a Yahoo group I had joined.
Meanwhile, our son became incredibly ill that month on doxy, missed a lot of school due to fevers and extreme exhaustion, had dark circles under his eyes, started drenching his pajamas clear down to the waterproof mattress pad with sweat every night among other things. We ran the washing machine so frequently it broke. He slept with a heater in his room because he was always chilled, extra sets of pajamas and two mattresses on the floor so he could wake up, change and switch beds in the middle of the night after a sweat. Seeing that he was continuing to go downhill I began researching and realized that resolution of his illness would take much more than a month or two of antibiotics. After reading other stories online and seeing lists of symptoms, an "aha" moment occurred and so many of the strange behaviors and symptoms the past year and a half now made complete sense.
After requesting pediatric LLMD referrals online and getting answers privately, speaking with other Lyme parents on the phone and much more internet research about the LLMD practice as well as the treatment paths other families had taken, we made an appointment with an LLMD that thankfully also handles pediatric cases. Luckily because of the holidays, we only waited about 3 weeks for an appointment. This gave his body a break from treatment and he was feeling better and able to more enjoy visiting family with only a few days where he crashed.
Our pediatric LLMD practitioner said they rarely ever see a test come in that was as positive as his. That means his immune system recognizes the infections which is a good thing because many people don't get that positive test result even though they have Lyme. His regimen will change over time but for the time being he is pulsing antibiotics with a few weeks on and then a week off. He is feeling pretty good despite the ongoing symptoms while he is on antibiotics, but has noticed he definitely feels worse on his "vacation" week which gives his body an important break from the antibiotics and allows his immune system to join in the fight.
It is clear from his nightly drenching sweats that emerged while on the initial treatment that he also probably has babesia so that will also be dealt with along with the Lyme and any other co-infections that may appear down the road. After his first bloodwork was drawn for the LLMD, it showed he has high levels of mycoplasma too. New symptoms continue to come and go, pains migrate through his joints, some which are swollen and some aren't. The complete and utter exhaustion lurks beneath the surface rising at any time along with chills and fevers followed by lower than normal temperatures. He is a real trooper, has a great attitude most of the time and pushes right through his nonstop daily fevers that have occurred and stayed since his first round of antibiotics and his periodic fever flus, joint swelling, neck cracking, wrist popping, painful toes, difficulty breathing, sweats and other symptoms. Every day is different with these diseases and flexibility is key.
UPDATE December 2017: It's been awhile since I've posted because I didn't want to jinx anything - and I truly wish for those of you in the the beginning or middle of treatment now the you too will have an opportunity to know this feeling someday sooner rather than later - he is now almost to maintenance after 2 years of full-time treatment as he is now living with NO symptoms. His blood work just came back negative for mycoplasma after a reinfection midway through treatment. So I'm going to go ahead and post because everyone needs to hear stories of healing! Please click here for a more detailed blog post.
UPDATE July 2018: It's been another 6 months of health for our son although mycoplasma continues to plague him. Nonetheless, after 3 years of missing lots of school, he missed just one day this school year and it was for a wicked cold, not Lyme. Our son just started a maintenance protocol despite the ups and downs of mycoplasma so he is on 3 weeks off and 1 week on of pulsed antibiotics. He is on and off needing to use his inhaler during athletics. He keeps one with him at all times although use is infrequent at this point. His LLMD appointments are now 6 months apart. I feel like the real test is just beginning - can he move off antibiotics and not relapse? Time will tell.
UPDATE November 2018: Click here for the latest.
Best of luck to you and yours as you navigate Lyme and tick diseases in the challenging circumstances we all find ourselves in. Be sure and send me a comment if you have a moment.