Wow! It’s a been a year to the day since I had my IV port surgery. It seems much longer. After the surgery I did six months of IV antibiotics. Four types of antibiotics were used over the course of those six months as well as a couple different IV supplemental medicines. After all those months of IV antibiotics, 1.5 years of about a dozen supplements, herbal antimicrobial tinctures and Chinese herbs, it did put my Lyme disease into remission (notice I did not say *cured*) but that was only one set of symptoms. I am still battling the co-infections, Bartonella and Babesia. I am definitely feeling better than I did when I was diagnosed but I still have a LONG way to go.
Babesia (a parasite similar to malaria) is what we’re working on fighting now. In another few months (hopefully, but it could be much longer) I’ll start IV meds to target Babesia. My doctor is trying to lower the overall load of the Babesia by targeting it with herbal tinctures that target Babesia. These herbal tinctures are powerful! Some people cannot tolerate one drop a day without having severe symptoms from the infection dying off. In fact, my daughter, Ally, was on a half a drop, twice a day and was feeling increased symptoms. Currently, I am able to tolerate six drops, twice a day, but I must get up to 20 drops, twice a day before I can start the IV meds. Generally these herbal remedies aren’t enough to kill off the entire infection (although pharmaceuticals don’t do that either) but many Lyme literate doctors (LLMD’s) start their patients on these herbs first to lower the overall load. Once they feel they have done that, then they bring out the big guns of pharmaceutical medications. Some people only use the herbal tinctures because either they have gotten too sick by using pharmaceuticals or they just don’t want to use them. Of course some doctors only use pharmaceuticals but that doesn’t seem to have a good remission rate and often people get too sick to continue only that approach. Many stay on antimicrobials even after the pharmaceuticals for the rest of their lives as a maintenance. There doesn’t seem to be a 100% cure for any of these infections once they go late stage so this is a friendly reminder to use proper preventative measures against ticks and other biting insects! And if you get a tick bite, ILADS.org recommends a prophylactic course of antibiotics started within the first 24-48 hours after a tick bite. You can get ticks tested for free from the Bay Area Lyme Foundation (you do not need to be in the Bay Area to get it tested for free).
It’s been said that treating Lyme disease and it’s co-infections are like peeling away the layers of an onion. I think that’s a pretty accurate description. Sometimes you get one infection load down and then something new that wasn’t seen before pops up. This is the biggest challenge with these infections. So far my treatment hasn’t been too complicated and I continue to improve, albeit slow. But I know many that have Lyme disease, including my daughter, Ally, have very sensitive body systems. These people are not easily treated as they have many, many layers to peel back.
Sometimes some of the layers are genetic predispositions that were triggered or turned on by the infections. After switching to a new LLMD recently, my daughter, Ally, was recently found to have secondary porphyria, kryptopyrroluria and POTS . From my understanding the first two are genetic predispositions that were triggered by the tick borne infections. POTS is Postural Orthostatic Tachycardia which is a type of Dysautonomia which, for her is caused by the infections doing damage to her nervous system. These are all complicating her treatment. She has not made much if any progress in the last year and a half. 😦 Ally also ended up becoming allergic to a couple of the IV antibiotics we had her on. The doctor thinks that she may have mast cell activation disorder which of course complicates everything even more. Currently Ally’s treatment is mainly consisting of getting these conditions under control and then the Dr thinks we can start treating the actual tick borne infections again. She has made some progress recently, as her migraines have decreased, so that is good. Unfortunately she still has severe fatigue, brain fog, hand tremors, nausea, air hunger, feelings of hot/cold, sweats and other neuro issues. We really have renewed hope with our new LLMD and I have faith that she’ll be making some more progress soon.
And now there’s three…
Some other news is that I recently took my other daughter, Nikki (13 years old) to our Lyme Dr. She had been exhibiting a few of the early symptoms that Ally had started showing shortly after puberty (which is a very common time for these infections to become active), so it had me worried that she was heading down the same path. The good news is that the Dr said he doesn’t see the symptoms of Lyme. The bad news is that he sees some of the symptoms of Bartonella which we are currently testing for. But he said that he sees Nikki as the “polar opposite of Ally,” (HA! for those of you that know my kids you know that is SPOT on!) and that he doesn’t think she’s as sensitive as Ally. This in his opinion means that Nikki would never get as sick as Ally. This of course is great news for Nikki but it makes me sad that Ally is so sensitive. He thinks that if we keep Nikki on the antimicrobial tincture for Bartonella and focus on keeping her immune system strong that she should stay healthy. The doctor and I both think that there’s a strong likelihood that I gave these infections to my daughters in utero or while breastfeeding since I most likely have had Lyme disease for 20-25 years. However they both have had a few tick bites in their time, which could have added to the infection loads. We will never know for sure.
Hopefully we will all continue to improve. Treatment is very slow. But I believe we are on the right track and will be well again. Thanks for reading! ❤
If you want more info on Babesia, this is a good article: http://suzycohen.com/articles/lyme_babesia_treatment/