Update: Not a positive one though

So I've gotten several emails from people here asking how I am. Unfortunately I 'm not MIA because of doing better. I'm still as symptomatic as I was, if not worse than 3 years ago when I first joined here.

After losing my first LLMD, I self treated for a while with herbs alone. I maintained for about 5 months and then started worsening again. I just restarted/added antibiotics back a few weeks ago with a different LLMD that I've been seeing for 10 months.

I get great benefit from injected vitamins. I also see a TCM doctor. I worsen slowly with herbs alone, am kept fairly reliably stagnant when antibiotics are in the mix, and I severely and quickly decline when I'm off all Lyme treatment (that's when my heart actually stopped). I also go to a mainstream electrophysiologist because of severe autonomic dysfunction that makes my heart rate and blood pressure drop and causes fainting up to 10x per day if I don't lie down.

I had a pacemaker implanted a few weeks ago. A unique semi experimental one in which I'm extremely grateful for. I have accepted the fact that some mainstream doctors can help even if not directly for Lyme. I'm 28, female, underweight and non-smoking. Lyme and B. duncani caused this in me. My heart stopped altogether one day and prior to that it fluctuated between the 30's and 200. I will never permanently improve IMO until I can gain control of the underlying cause.

I normally do not get along with mainstream lyme illiterate MD's as many may have read of my bad experiences on my blog. My current EP has changed from not taking me seriously to treating me as aggressively as possible.

Do I like resorting to mainstream treatment? No. I never would have needed a pacemaker or be stuck with lifelong autonomic dysfunction had I been able to access IV antibiotics. For now, and until a better treatment is found or using long-term IV abx is covered and accepted, I have to resort to both symptomatic and anti microbial treatments to stay functional.

Post Edited (Summer3) : 10/12/2014 5:39:55 AM (GMT-6)

Right now I'm on Biaxin, CSA, A-BART, A-L, Colloidal Silver, Nystatin, L-Carnitine, CoQ10, TCM herbs, and my heart and BP drugs. I change things around very often and have to go off and on things to make sure that I can feel if they are interacting or causing a problem with my heart and BP drugs (one of which is pretty rare to use). My current Lyme doctor is very intelligent and always has lots of alternative suggestions. I tend to be extremely wary of trying "outside the box" methods that don't directly involve antimicrobials. On the other hand, I wouldn't have needed to go to alternative doctors (who are the only ones even trying other than one mainstream cardiologist) if mainstream medicine had helped me.

I feel fortunate to have the pacemaker. Although I do not have any lethal arrhythmia's and technically wasn't supposed to be "pacemaker dependent," the fainting without warning which only happened when my heart stopped or when it dropped very low mid-day (30's) could have easily caused death if I fainted or fell in the wrong situation. The pacemaker was implanted for the pause due to vagally mediated AV block, bradycardia, and to help out my low BP.

The first night they interrogated it predicting 40% pacing or less. I was paced at 87%. A few weeks later I contacted them feeling a strange sensation often when it paced. I was pacing from my ventricular lead. They said usually if that's kicking in (in my situation) it's because you have no heartbeats likely due to high vagal tone or some type of heart block. So I think I needed this pacemaker more than I or the doctors initially thought.

Many had said to me to just treat Lyme and not go to mainstream doctors. I agree with that most of the time. However, in this case that would have been extremely unwise. I was and still am unable to afford IV antibiotics which in my opinion is the only thing that would have had the ability to reverse the heart symptoms/autonomic dysfunction permanently. I tried all oral options for 3 years straight and my heart symptoms continued to worsen despite that. I can't treat Lyme if I'm dead. I need to keep my heart beating and prevent a fainting-related tragedy or I won't be able to treat Lyme at all.

The surgery hurt, but I was happy my doctor let me do it awake and non-sedated........another first for the OR team. I have not had a biopsy. I suspect that the reason my pacemaker is pacing the ventricle (not expected by docs for my diagnosis/indication) is due to intermittent heart block from Lyme.