Saturday, April 11, 2015
As most are aware, heart block is a known yet fairly rare complication of Lyme disease. I started seeing cardiologists in September of 2013. Every single time I had a visit with the initial cardiologist and the electrophysiologist he referred me to, I brought up heart block. I wanted to know how they knew heart block wasn't what was behind my constant drops in BP, heart palpitations, fatigue, dizziness, etc. since it seemed to be the only logical explanation for suddenly developing so many heart related issues in my 20's after a tick bite. Every time I asked, I was assured/dismissed because my ECG during a 30 second snapshot of time did not show heart block. I didn't have it because "Lyme heart block" is continual. Really? I can't find that information anywhere through ILADS research. Yes sometimes it is continual, but always? It cannot be intermittent?
Eventually when my heart started dropping into the 30's shortly after I returned a 30-day heart monitor that did NOT catch this phenomena, I asked for longer-term monitoring and was offered a Reveal LINQ implanted heart monitor. To my disappointment, when I called the company to find out if heart block would auto-trigger the alert system to be recorded they told me no........only if an episode of symptoms was flagged or my heart dropped below 20 or stopped. Basically the LINQ only records VTACH, VFIB, rates under 20 and pauses on it's own. I thought I'd never catch or prove that heart block was behind my issues.
Then something really bad happened in August. I wasn't feeling well so I didn't leave the house that day and in the evening as I was watching TV, I felt like I was going to die. Sheer panic out of nowhere alongside losing consciousness for a few seconds. That turned out to be my heart stopping........in 2nd degree block. It was the episode that qualified me for the for the pacemaker last August. Since getting the pacemaker, my ventricular pacing percentage (which only kicks in when my heart is pausing in heart block) has dramatically increased each month. It's now averaging several hours per day. So basically, I can measure the fact that active Lyme infection is progressing based on my progressing percentage of heart block each month. There is no other reasonable explanation for why my percentage of heart block would rise every single month. This pacemaker is coming in handy in more ways than expected!!
Based on that data, I should qualify for IV Rocephin from even the most stringent IDSA-based doctors. Documented unexplained heart block in a female in their 20's following a known tick bite, rash and fever with a CDC positive western blot? It's a no brainer right? Well apparently not. The mainstream doctors at a nearby esteemed hospital haven't even tried to refer me to their colleagues in infectious disease for Lyme treatment despite the fact that I never had any IV antibiotics nor did I improve from orals and ALL of my symptoms began following a known tick bite. In fact, none of the mainstream doctors I've seen have ever even asked me what I've done to treat Lyme past or present. They don't even know if I've had a month of doxycycline.
Since I am barely hanging on health-wise and financially, I'm not in the position to see doctors like Dr. H. or pay for IV antibiotics out of pocket. It's simply not financially possible. I was however recently given the opportunity to try intramuscular shots of Rocephin.......and I'm absolutely thrilled, and tremendously thankful to the doctors/office that is helping me with this. I have not been so happy or even had any shred of hope of permanent improvement for the past several years until hearing this news. If nothing else, the chance to try this has given me some hope. The doctors I see and even most friends and family members have no idea how upset and frustrated I am and how often I just don't want to do this anymore. There have been many times that I'm so ill that I wish that when my heart had stopped, it wouldn't have restarted......because I don't want to live my life like this........constantly getting worse and more and more unable to function. I REALLY want to get better, but from a logical standpoint I'm not naive. I know that my infection is going to be nearly impossible to cure since it's been present so long and it's not responsive to anything in oral form.
I knew from past research that intramuscular Rocephin was not pleasant. In fact most of the info I came across consisted of horror stories about how painful the injection was. I was definitely nervous. I've done IM shots on myself before and never had much pain, but the reviews of Rocephin included statements like "I was crying my eyes out for 45 minutes before I could hobble out to the car." "I passed out and couldn't walk without excruciating pain for weeks." Family members were telling me that their friends had told them about having shots of Rocephin and how they had to be carried out to the car and couldn't walk normally for weeks........after one shot. I even came across nursing message boards where nurses gathered to discuss how Rocephin was the most painful shot they had to give to patients. Great.............I'll do anything to get better. ANYTHING! The reviews were definitely scaring me though and making me very uneasy.
I went to pick up the supplies and realized that I was going to be mixing the Rocephin from a powder with sterile water. I had read that Rocephin was usually mixed with lidocaine to lessen the pain......and even so the people were complaining of severe pain. UGH! I'm really getting afraid now. I also had to use a much larger needle than usual (22 gauge instead of 25).
I don't know why I was so nervous. I know that I don't feel pain like normal people due to nerve damage/neuropathy. I can do magnesium sulfate shots (another notoriously painful substance) with no pain. I can even grab hot pans from the oven and not realize my hand has slipped off the towel touching the metal until I hear the sizzling of burning skin. I did my pacemaker surgery awake without sedation or pain medications.....that was painful.......but not unbearable and I was one of the only people my EP had ever seen in 30+ years of practicing that did a 3-hour pacemaker surgery completely awake. So why was I nervous? I don't know. People think I'm never afraid of anything, but I am. I'm stubborn, so I tend to force myself to do things that I'm scared of without letting that fear show.
I decided to not get worked up about it and just do the shot as quickly as possible. So I literally pulled over in a Mcdonalds parking lot, mixed it up, drew it into the syringe and injected into my hip. Thank god I'm in a very rural area and I'm not new to self-injecting IM, so I can do it extremely quickly and discretely. Within the first couple of seconds, to my shock, the pain level of the liquid was very very low. Less than a magnesium shot. Similar to B12. Yes I had some soreness in the muscle. It lasted about an hour. Excruciating pain? No. Shortly after I did the shot my BP dropped and I got very nauseous and pale. That's not new for me. It was probably coincidental. I have severe dysautonomia as a result of Lyme. My BP drops non-stop.....for no reason. That's the reason I'm paced 100% of the day. My pacemaker kicked in with ventricular snapping to get my heart out of a pausing state, and in a few minutes I was okay.
After only a few hours, I definitely started to feel some herxing. I was already severely ill a few days ago with fevers, aches, pains, exhaustion, heart abnormalities etc. after trying salt/C. I just got past that and now once again the same feeling is back. I'm feeling flu-like and perhaps having mild allergies. I took some Claritin and alka seltzer. I'm sure I'll be fine. I'd rather feel strong herxing and know that this is doing something than feel nothing at all and continue to get worse.
So now what I'm thinking about is how to maximize the benefits of Rocephin because it may only be a short-term treatment. I'm thinking since Rocephin is primarily a treatment for Lyme, I should switch my herbs to target Lyme aggressively and lay off co-infections for a while since I've been treating them a long time anyway without much improvement. My plan is A-L, stevia (for cysts), claritin (to lessen the chances of allergic reaction and potentially have some killing effect on Lyme), Banderol and Samento.
Thursday, April 9, 2015
Unfortunately (or fortunately I guess in this case), due to neuropathy, I don't feel much of anything in my hands or feet. So I didn't feel any of the needles being used. I didn't notice much during the session. A few hours later I started to feel really tired and abnormally calm, but I didn't think much of it.
The same day I had the bright idea to try salt/C. I started with about 8 grams of salt, drinking it in water and 5g of C in tablets. Since I also have dysautonomia, the salt was not extreme for me. I'm advised by a cardiologist to go as high as 10g per day. Usually I don't drink it though. I normally take salt tablets or put it on food throughout the day.
Well a few hours after these new treatments I started to feel so weak that I couldn't function. My heart went out of rhythm, I had a fever, and my entire body felt like it had been run over by a truck......severe aches, pains and chills. I slept from 3:00 p.m. to 7:00 a.m. the next day without waking up even one time. The following day, even though I knew it wasn't a cold, I tried some cold remedies because I literally couldn't sit up out of bed. I resorted to alka seltzer, aspirin, oregano, zinc, and lots of water, ginseng and green tea. I remained off the salt/C for now. I'm just starting to clear the herx.
I don't know which new treatment triggered this, but I'm leaning toward the salt/C. I will be trying that again, but not until I'm strong enough and have some available time to deal with the herxing!! I don't think I've ever had such a clear and immediate reaction to anything before. I was contemplating going to the hospital because of how crappy I felt. I even called my pacemaker center to make sure nothing really bad had gone over the heart monitor! I am shocked by my reaction to one of the above two new treatments. Neither one should have caused such a severe reaction for someone who's been treating aggressively for nearly 4 years.