Sunday, March 22, 2015

Still Herxing 3.5 Years In......Yet I Feel Like I Have NO Chance of Improvement

I've been treating my initial Lyme infection for 3.5 years. I've done heavy antibiotics, herbs alone, and herbs plus very light oral antibiotics. I've tested and treated for mold, metals, co-infections, adrenal function, thyroid function, etc. I haven't eaten gluten, sugar, dairy, etc. for years. I don't have co-existing conditions. Lyme, Babesia and autonomic dysfunction are my only documented health conditions.

I've never had access to IV antibiotics despite the fact that every symptom I have started alongside a known tick bite, rash and fever, I have a CDC positive test for Lyme, a Quest positive test for B. Duncani, documented heart block, and pretty much every other manifestation of the disease including fevers and objectively quantified nerve damage in my hands and feet. That's pretty aggravating to me. Even mainstream IDSA guidelines list heart block as an indication for a month of Rocephin, so why has nobody offered this to me?

I know people locally who have gotten IV antibiotics fully covered for a month by a mainstream hospital-based doctor just because they had a tick bite and a headache. They were treated within weeks of their infection for "lyme meningitis" or in some cases Bell's Palsy. I'm not angry at the people/patients. They deserve aggressive treatment in my opinion no matter what stage they're in. I'm angry at certain doctors who are denying IV antibiotic treatment to MANY people that 100% need it without a doubt. I am one of those people. What other evidence do I need to get help?

In my case, despite my rising percentage of heart block which can be seen via my pacemaker data each month, I am not offered even the standard one month of IV antibiotics. I cannot afford to pay for it out of pocket so basically I'm screwed and I don't even care anymore. Even if I had all the money in the world, I'm not sure that I would give it to certain LLMD's. I think there are some who are taking advantage of patients by charging exorbitant amounts of money for appointment fees solely because they know we have very few options as patients in terms of who we can see for help with chronic Lyme. Not all..........but definitely some of them like doctors of any specialty.

I have felt for the past two years at least that this infection WILL kill me. It's only a matter of time. I don't think that's an exaggeration. I got pretty close when my heart stopped. I continue to get close frequently when my BP drops to 0. Who knows when it will finally decide it doesn't have the willpower to raise back up again.

At this point, I'm indifferent to the fact that my condition is getting worse and will likely end up killing me one day. I'm accepting of it. I've tried what I can to get treatment, but I'm not able to. I'm not giving up, so don't interpret this post that way. I'm still on herbs. I'm still on one antibiotic at a time, BP raising meds and my beta blocker which I take solely to prevent a fast deadly arrhythmia (and stave off Babesia according to Dr. H.). I take what I have access to, but do I think one antibiotic and herbs that I've been on long-term are going to suddenly start helping or put me into remission? No. Absolutely not. That's evident by the perpetually rising percentage of heart block.

I've said to numerous family members that if anything were to happen to me I want an autopsy to focus on my heart and prove that active Lyme was the cause of my death. I am 100% serious about this statement. If I have to be a victim of Lyme, I am not allowing doctors to once again incorrectly blame another condition as my cause of death and ignore the condition some more. 

As far as herxing......I still get clear herxing from Plaquenil of all things. Starting in the 3rd week (my typical worst week for herxing) I started getting daily headaches, fevers, severe uncharacteristic anxiety, depression, severe numbness in my limbs, etc. As for herbs, I changed things up again yet all of the following are things I've taken many times in the past. My protocol is now Banderol (30x2), Samento (30x2), BW A-L (15x2), CSA (60x2), Liver tincture (30x3), B12 shots (1mg), Magnesium shots, L-Carnitine (1000mg. x 2), Ginseng, and my heart/BP meds: Bystolic (2.5), Midodrine, Mestinon.

My TCM doctor said if my pulse doesn't improve from his herbs in the next two weeks (which it hasn't improved in about a year), I need to take a two month break from his herbs too. Essentially I think he's giving up too, but oh well, I'm used to it. All doctors give up on my case eventually. After all, even the head of neurology at the largest hospital in my area where I have never heard of one person leaving with ANY symptom blamed on Lyme, didn't say I don't have Lyme. He didn't misdiagnose me with MS, anxiety, somataform disorder, etc. But he didn't know what to do for me and didn't want to be involved. He ran his tests and told my other mainstream doctor to find someone else to help me. He is not partaking in the treatment plan or followup. It's always find someone else, call someone else, with me. Unfortunately that "someone else" who knows what to do and can help or cure me doesn't exist and I'm not going to search for someone who doesn't exist for my entire life.