August and September have been a back slide with Neurological Lyme disease. Because Bicillin was on shortage, I had to go back on oral antibiotics. But now that it’s back on the market, I’m back on Bicillin shots which bypass the GI and keep the damage to the GI lower. Handling GI damage while trying to kill Lyme is just too much. When Bicillin was on shortage this summer, it only available to those with Syphilis if you can believe that. A Lymie wasn’t considered important, never mind that the drug literally kept the pathogen from exploding what’s left of my brain. Whatever.
Each day I read about how the CDC and lead scientists have known all along (since 1995) about the long term neurological affects of Lyme if it’s not diagnosed quickly and treated early. And today these same doctors deny the existence of Chronic Lyme Disease. It boils my blood to read what blatant liars the CDC and IDSA are. In Europe, they call my disease Borreliosis, because the borrelia have made it past the blood brain barrier and it’s nearly impossible to eradicate it from there. The Lyme wars are getting worse, and now there’s a big push from a vaccine inventor whose son almost died of Lyme carditis to get a vaccine on the market. That infuriates me more, because what about the 300,000 new cases of Lyme (likely Chronic Lyme that went undiagnosed versus acute Lyme disease where the patient was diagnosed within a few weeks of a tick bite) which are added into the growing millions year after year of uncured Chronic Lyme Disease? They are completely ignored and told that long term antibiotics are not the answer. But at this point they also have no answer. They just say it’s all in the patient’s head. Yes, that’s what they say. I respectfully disagree.
The only thing keeping me stable at this point are weekly Bicillin injections, monthly IVIG and the occasional oral antibiotics. I can’t imagine a vaccine for multiple strains of Borrelia that cause Lyme-like symptoms. This same thing happened with Polio. Pharmaceutical companies made a vaccine, it didn’t work because it was for only one strain and they had to make it for several strains. But Lyme is different because at this point we know there of 300 strains world-wide and it keeps growing. Borrelia is unusual in that it can cross genes and become a new strain very easily. Common sense says a vaccine is not viable for Lyme or Borreliosis and any vaccine sold on the market will only include to one or two strains. But that is enough to scare the public into buying it and lining the pockets of those who use fear tactics to sell a product rather than help those who are already very sick and need a cure. This controversy is infuriating. I’m not an anti-vaxer because I do believe some vaccines are necessary and I advocate for safe vaccinations. But I’m living with and battling this disease daily and I can tell you, there’s no way there can be a vaccine for such a stealth, ever-fluctuating pathogen.
At this point, I’m just hoping I can learn to control it. It’s one reason why I won’t return to work. I still have no idea of when body will go bonkers and NeuroLyme comes back. By bonkers I mean, migraines, light and sound sensitivity, auditory and olfactory hallucinations, massive insomnia, restless legs, tremors and trembling, tics and twitches, focus problems, reading comprehension problems, lack of basic stamina, and the list goes on. Did you notice the lack of posting in August, and then suddenly I caught up with my posts and stories? That’s Lyme for you. I can’t sit at a computer too long. And I can’t imagine trying to be accountable to a job if I have no way of controlling this disease.
We’re still at the stage of suppressing the pathogen and bringing the immune system back and hopefully finding a way to address the pathogen any time it starts to wake up. That’s the problem is nailing down which form of the pathogen brings on the symptoms and which drug or herb will work to push it back with minimal damage or side effects. I’m desperate to manage my disease with herbal remedies. Believe me, Cat’s Claw, which is a common herb used for Lyme disease packs a mighty hard punch, so much so that Mr. Wild Dingo does not want me to take it. In some ways it’s harder on the body because the herbs are so strong (sometimes stronger than an antibiotic) at killing but easier on the GI for sure. I can barely handle 1 drop of Cat’s Claw without major neurological symptoms. Lyme die-off will often set off the actual symptoms as well. Nothing would make me happier than to go fully herbal, but honestly, it’s hard as hell.
Meanwhile, I just had my monthly dose of IVIG and Bob, my nurse, brings his shy dog Joanna. I adore Joanna, but Joanna doesn’t let me pet her and she isn’t crazy about Loki but she likes Juno well enough. Loki is very gentle with her but just you know, he’s a cracker and loud. Today, Joanna hopped up on the sofa and pawed me for snuggles, then she kissed me. I totally won her over. Best. Medicine. Ever.
She also seems to really love it here. This time she didn’t run out the door to leave as she usually does when it’s time to go. She just stood in the foyer and wanted to stay.
It also seems like she’s getting used to the cracker’s boisterous, barbarian ways such as when he brings his blanket for a tug of war with her Pop.
This dog. This pose. I. Can’t. Even.
Screw you Lyme Disease. Screw you CDC. I don’t need your punk-ass lies. Joanna kissed me. And my boo-boo is much better now!