6 of us visited with our Lyme doc yesterday.We don’t have to go often and because he is located about an hour away from us, I try to schedule everyone at once.
I sat in his office while each of the kids came in one at a time (I was reminded of Henry Ford’s assembly line.)
- One kid who was newly infected this summer (found an embedded tick and within two weeks was in bed with a flu, intermittent fever, and headaches) completed his one month supply of antibiotics. Because this is the second time he’s been treated for Lyme and because he’s in a high risk situation (lots of hiking) the decision was made to continue him on meds for a full 2 more months. If you catch it early enough and hit it hard enough, Lyme can be controlled with a steady, long dose of antibiotics.
Compare that to a mom who contacted me when her son got the tick bulls-eye rash. He was put on antibiotics by his non-LLMD for 2 weeks.
Although there is a chance that that woman’s child will knock out his infection (it depends on so many things, health, nutrition, stress level, strength of immune system), after seeing the devastation in our family, I’m not willing to take a chance like that. Refills have already been ordered for my son.
- One of our kids has never shown symptoms of Lyme, although she is complaining of some knee pain (but then that’s what soccer practice will get you.) We’ll keep an eye on her, but for now, there is no indication to treat her. (see? not everyone gets automatically treated.)
- One kid who has been treated for Lyme and Bartonella seems to be doing fine. He has a large “bart rash” that has faded considerably. No additional treatment is indicated for him, but like everyone else who has had previous treatment, he is being carefully watched for any kind of a relapse.
- One kid is currently being treated for Lyme and Bartonella. We’ve noticed a return in some of her symptoms recently (memory issues, napping) since she started her treatment and it turns out that, surprise, surprise, she hasn’t been taking her meds. I’ve found that medication compliance in kids is one of the most difficult aspects of Lyme treatment (and causes the most arguments.) Kids don’t want to be sick, but neither do they want to take medication (especially when it may upset their stomachs.) Also, when they start feeling better, kids (who think they are invulnerable) tend to slack off on the meds.
A stern talking to, but in the end, it’s up to her. You either want to get better or you don’t. Choose. She chose the meds, we’ve ordered refills for her.
- The last child and I went together. We’re both being treated long-term for Lyme and Bart and will continue treatment for at least the next three months (most probably longer.) The doc stressed the role of probiotics and talked to us about the importance of a good diet. No processed foods, if you are going to eat bread, make it an ancient grain, go easy on the meat, eat tons of vegetables, drink a lot of water, and get exercise everyday. Not exactly brain science but something that I (and apparently many other people) tend to forget.
I think I need to make laminated business cards with those rules on them and just keep one in my back pocket to pull out each time I sit down to eat.
Weight is an ongoing issue when you have Lyme disease (it’s really Lyme complex because it’s so much more than Lyme.) When you joints hurt you don’t exercise. When you don’t feel good, you don’t feel good enough to get up and move (I’m talking mentally, as well as physically.) Those of us with Lyme-induced joint damage have to be particularly careful about extra weight on our joints. For whatever reason, this time that message really sunk in. I’m going to try my hardest.
My Lyme symptoms which are now just occasional leg muscle twitches and sore bottoms of feet, are certainly getting better, but are still there. I never got the Bart rash but my son did and his streaks appear to be fading. Both of us maintaining. This is the stage where it’s important not to slack off by getting too cocky. We both still have our infections, it’s just that they seem to be relatively under control.
One thing the doc mentioned was that mold sensitivities tend to hit some of those with Lyme disease a little harder than those who don’t have it. (you can actually have a test to see if you have the gene that allows this sensitivity) It stands to reason, if you have Lyme, your body is under attack, any other insults will only drain the energy needed for healing. I mentioned that my kids were also suffering horribly from seasonal allergies this year and said that between the mold and pollen, we should probably invest in an air purifier(s) (already balking at the price of those things.) That’s when he showed us his “air purifier.” All he did was take a household air filter and tape it to the back of a square fan. The key is that it has to have a “Merv rating” of 11 or higher.
Air gets pulled in and trapped and clean air gets pulled out. The filter below sells for about $17 at Home Depot. You can obviously buy a higher quality one if you want, prices vary. Our doc changes his filter about every 3 months (4 times a year.)
I know that people who suffer from Lyme are all ready tapped out for cash (trust me, I know) so I thought I’d pass on this air purifier Lyme-McGiver suggestion for anyone who may want to clean some of the air in the area where they live or sleep at an affordable price. If it can reduce the pollen and mold thereby reducing the load on your body, then it will be money well spent.
As always, I share our experiences with Lyme disease and co-infections to educate and raise awareness. This is the treatment my family is getting, it may not be what is appropriate for you. Ask questions, find a Lyme board, join a support group, and if you suspect you may have Lyme disease consult your physician.
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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