Tuesday, November 17, 2015

First Normal Exercise Session in 4+ Years

Today I woke up very symptomatic, like most days. I had immense overall weakness in my limbs, flu-like fatigue and aching, dizziness, muscle weakness and severe nausea from very low blood pressure due to autonomic nerve damage from Lyme disease. I was having a hard time standing even to just get to the bathroom. I knew once I could get my meds on board I'd have a chance to turn things around. I've been keeping all my meds and a bottle of salted water within arms reach of my bed lately because sometimes it's impossible for me to get to it otherwise. 

I had so much to do today, but in order to function I have to get my BP up and the only reliable way I can do that is to go running. I maxed out on midodrine, mestinon, octreotide and my beta blocker and headed to the trail where my heart decided to flip out and jump up to 187. It was very hard to stand as I began pouring sweat and gagging from nausea. I waited it out and forced some running like I do every single day. Normally I'm forced to stop every 1/10 of a mile due to low BP symptoms. Today, thanks to increased IV glutathione this past week, I was able to start running and complete 3 miles without stopping!!! It's the first time in 4 years. I was also able to do shorter continual distances several times over the weekend. 

Is this a cure? Am I getting better? No. It's purely the temporary result of IV vitamins which are likely detoxing my body and helping with potential malnourishment. However, I am so grateful to have a little symptomatic relief.

 I've been worsening overall for months. I had a setting changed on my pacemaker several months ago to keep my heart rate up during exercise. I haven't even been able to test out that setting because my BP has been so poorly controlled. Finally today I could. I ran for an extended amount of time and the advanced setting kept my heart rate up appropriately. 

In other news, my 2nd echocardiogram was a few weeks ago. It was done to assess for signs of heart failure because I am requiring substantially more pacing than was predicted. Desynchronization of the ventricles can lead to damage in some cases. Within an hour of the echo, my EP's office called to tell me I was in the clear for now. My ejection fraction is 57%. 

I've noticed the past few weeks that my arrhythmias are returning. Since the pacemaker, my heartbeat had been pretty regular but lately it's getting irregular again and fast as well (up to 204) in episodes away from exercise. I think that my beta has lost effectiveness. I'm undecided about whether I should switch, go off it or just keep taking it. I don't know that my BP can handle increasing the dose. 

My Lyme treatment has remained the same. I'm on a popular babesia duo alongside additions of colostrum and My Community mushroom tincture this month. My lymphocytes have been very low and BUN is headed out of range again. Surprisingly I seem to be herxing fairly severely on the mushroom tincture with mood instability, exhaustion and fevers. 

I'm still able to eat what I want thanks to octreotide although I'm concerned that I can't seem to gain any weight despite this. This medication has dramatically improved my quality of life. I was really getting to a state of hopelessness the last few months. Being able to eat and temporarily feel better from IV vitamins had literally been a physical and emotional lifesaver for me. 

Saturday, October 31, 2015

Gone in a Heartbeat

So I realized that I haven't written a single update for the month of October and now the last day of the month is here. I think my last electrophysiology appointment really got to me emotionally. I always struggle after those appointments to accept that this won't get better and that I'm out of symptomatic treatment options for my autonomic dysfunction. I also found out that I've crossed over into a percentage of ventricular pacing (pacing for heart block) that puts me at increased risk of heart failure.

It was a lot to take in and I shut down. I've been keeping my mind blank. I'm living every day minute to minute and not thinking in advance because I don't want to let depression take hold. A few weeks ago I also lost Octreotide (the medication that's allowing me to eat without severe drops in blood pressure) and stopping that cold turkey almost sent me into an autonomic crisis worthy of the ER. I have since resumed Octreotide thanks to prompt action on the part of my cardiologist. I definitely feel better when I can actually eat and drink like a somewhat normal person.

In the midst of this, I came across a book called Gone in a Heartbeat by Dr. Neil Spector. Dr. Spector is an oncologist at Duke who was diagnosed with Lyme disease. His heart manifestations progressed to the point of requiring a heart transplant. He now seems to be doing well health-wise.

The book was scary to me at first. Many of his experiences with his heart were nearly identical to mine. Like me, he is also an avid runner. He runs often to relieve stress. His heart problems began with just tachycardia and skipped beats. His doctors blamed it on stress and didn't take him seriously. Eventually he caught an episode of VTACH and received an ICD/pacemaker. Soon after he started to develop heart failure. Dr. Spector was diagnosed with Lyme and treated with IV antibiotics (something I've never had), but surprisingly, the IV medications did not help in terms of his progressing heart damage. His cardiologist tried a biventricular pacemaker; that's what they will try with me if my ejection fraction has gone down next month. The biventricular device didn't help either. He then went under 10% heart function and needed a transplant which created another slew of complications.

Although this book does not delve into detail about Lyme disease, Dr. Spector does a great job of describing what chronic illness patients go through emotionally.......particularly those with heart arrhythmia's. The fear, the depression, the frustration about not having a curative treatment. He included a lot of insight from his unique perspective as both a physician and a patient. He mentioned how he used to hate when his colleagues would discuss patients that "failed" treatment. He felt like it puts the blame on the patient. That's 100% true. I constantly feel like a failure when medications don't work for me.....like I should be doing something to make them work. He also spoke of how doctors would abandon cancer patients because they couldn't handle caring for people who would not get better. I think that happens extremely often. I've been abandoned by multiple doctors. Most notably my first LLMD. It's a horrible feeling. Not only does it make the patient feel like a failure, but it makes them feel like there's no hope and they should just give up.

Dr. Spector also discussed the point in his life where he was depressed and didn't want to go on anymore. He fully understands the emotional toll that serious illness takes on people. In addition, he talks about many occasions in which he as a physician was not taken seriously when he had a medical concern. His doctors repeatedly blamed his symptoms on stress. One time a nurse completely disregarded a low battery alert coming from his ICD. As a patient, I've found that my concerns have been downplayed or ignored more often than not, but I would never expect doctors to treat other doctors the same way. I assumed doctors had it easier when they are the patient. I thought their colleagues would treat them with a higher degree of respect than an average patient with no medical background.

I really enjoyed reading this book. While it presents a case of severe and unusual heart manifestations due to Lyme that could create anxiety in some people, I see it as a realistic account of what people with serious illnesses go through physically and emotionally. I don't think I've ever read a book that depicts these factors so accurately.

Friday, September 18, 2015

Quality of Life vs. Longevity

I had a pacemaker follow-up the other day. As I predicted, my ventricular pacing, a measure of how much time I spend in heart block or pausing has doubled again from 13% to 30%. There are days that I pace in the ventricle 50%. Ventricular pacing over 40% can increase the chances of developing pacemaker-induced heart failure or reduced heart function. I will need to repeat an echo soon. If it shows signs of damage, the treatment would be to add a 3rd lead and a new device; a biventricular pacemaker.

I'm quite angry about this situation because I have always said from the first day of my illness that it was Lyme. There is no doubt in my mind. I had a known tick bite, a rash, a fever of 105 and a positive test. The progressing % of heart block is 100% due to Lyme. Despite all of this clear evidence, I have never even had access to a month of IV Rocephin. I meet criteria that should qualify me even by an infectious disease doctors' standards and still have not had it; even as I'm now developing a risk of heart failure in my 20's. None of this would have ever happened if doctors had listened to me 4 years ago and given me the month of Rocephin when I clearly wasn't improving after a month of low dose doxy. At this point it's not even worth fighting for because I've tried so many other strong treatments for Lyme that I don't think one month of Rocephin would do one bit of good. The infection is far too advanced and infiltrated into my body in my opinion.

The news about the potential of needing another pacemaker has created a dilemma for me. It's making me question whether prolonging my life and heart function would be the right decision. I question if increasing longevity would be the right choice if my quality of life will never improve and will likely continue to decline. My quality of life is not good right now. I have no way to control my BP on my own now that I'm losing my ability to exercise. Running was the one way I could get a temporary spike in BP. Oral medications are not working. I've exhausted all options that I can obtain. When my BP is low or drops suddenly, I'm completely miserable and have to lie down. I lose my vision, hearing, get slurred speech, dizziness, severe exhaustion, limb numbness, whirling in my throat, nausea, vomiting, etc. It incapacitates me 10-30x per day.

The new pacemaker would not improve anything with my current symptoms. It would only safeguard my heart from failure by synchronizing the pumping action of both ventricles. Every few months something new seems to happen with my heart so I'm not even sure how much of a safety net the pacemaker would realistically provide. With my luck, a few months later I'll probably develop VTACH or VFIB and require another surgery for an ICD.

Autonomic dysfunction is a lifelong chronic condition. So is Lyme in my case. I'm not new to treating either condition, and unfortunately very few things have ever given me substantial temporary improvement. Nothing has given me any permanent improvement. These conditions are drastically hindering my ability to function like a normal person and perform everyday tasks. The way things have been progressing this summer, I know I'm going to lose my ability to exercise and maintain conditioning very soon. Once that happens, I will very quickly lose a lot of functioning capability.

The weird awareness that I have of what my heart is doing at all times is what saved me last year. At first it was relatively benign short-lived pausing, but now it has morphed into long episodes of no heartbeat. At this point, if I had no pacemaker I probably wouldn't survive. A person obviously cannot have an absence of ventricular beats for 8 hours per day and remain alive. So this is a very serious decision I have to make if I decide to decline a pacemaker. Most people don't get this type of choice in their lives and it's easy for people to exclaim that they would do everything possible to live. It doesn't seem to be as easy for them to understand that the definition of "living" is dramatically different between someone who will regain their health as a result of a medical intervention and someone with a chronic illness who will not improve as a result of a procedure. I don't just have bradycardia or pausing. A pacemaker doesn't cure me. I don't need to hear about how so-and-so has a pacemaker and it changed their life. That person doesn't have autonomic failure. Their pacemaker experience is irrelevant to my case. For me living with this combination of illnesses is more like struggling and suffering just to get by because sadly, yet realistically I will NOT get better. There is no cure for this extent of autonomic nerve damage. It's not going to matter how many antibiotics I take.

I took medical intervention last year and kept myself alive, but was that what was supposed to happen? Am I supposed to be alive or did I just luck out? Did I make the right decision in pursuing heart treatment or did I just end up condemning myself to a life of progressing disability and suffering? My dad ignored his symptoms and that choice was a contributing factor in his death. However, I don't know what his life would be like if he were still alive today; if he had survived the heart attack but been left with severe permanent damage. Would he have wanted that? What would he have chosen?

Saturday, September 5, 2015


From the time I first got sick 4 years ago, I have nearly always had mild elevations of bilirubin. Bilirubin is a product of the breakdown of red blood cells. When it's elevated, you can develop jaundice. In my case, the elevations are usually very mild 1.1-1.3 with a range of 0.2-1.0. The last few weeks I've been trending upwards and I'm now at 2.3. Nearly double of my "normal." This change happened shortly after I stopped taking actigall (a medication which may have been preventing or treating gallstone formation) and started Octreotide (a medication known to CAUSE gallbladder problems in >60% of patients). I have been having fantastic results with Octreotide so I would like to do everything I possibly can to not have that medication pulled. It has been allowing me to eat without a severe drop in BP for the first time in years. It's one of the only medications out of countless trials that has given me a reliable way to help MYSELF out of a severe symptom set.

In the past, mainstream doctors have blamed Gilbert's Syndrome on my mild elevation of bilirubin. Gilbert's syndrome is a harmless genetic mutation and it affects the way that the liver processes bilirubin. There is no need for treatment, and the liver enzymes can be expected to remain slightly high and fluctuate in and out of mild jaundice levels from time to time. This sounds logical..........except, in my case neither parent nor my siblings have ever had increased bilirubin. I seem to be the only one.

Factors that increase the chances of your bilirubin going up are as follows:
  • Dehydration
  • Lack of sleep
  • Low calorie diet or fasting
  • Menstruation
  • Stress
  • Illness
  • Strenuous exercise
Increased liver enzymes are often associated with Erlichia as well. I do not test positive for Erlichia (but do for Babesia Duncani and Lyme). 
I've also been fluctuating in and out of normal range for BUN and my potassium is starting to drop as well.  It's very difficult for me to maintain fluid/electrolyte balance with all the medications I need to take, my salt intake for low blood pressure, the running I force to keep my BP up temporarily and the hot weather we've been having. I think that if I had gone to the ER or had access to an infusion center to get rehydrated when I clearly was dehydrated multiple times, I would have none of these abnormalities.

Thursday, July 30, 2015

Mepron: Weeks 3 and 4

In week 3 of Mepron I suddenly developed severe muscle pain like I've never had before in my life. It was affecting my sternum, pacemaker area, arms, legs, wrists, ankles, fingers, toes, etc. Every time I'd move any part of my limb my muscles would cramp up; kind of like what happens when you get a horribly painful foot cramp while swimming. I seriously thought that I must be having a problem with low potassium or dehydration but my blood work didn't reflect anything so it must have been part of a Mepron herx. I also had a fever for one day of 103.

I have not been able to run for many weeks. I'm extremely tired and weak. Fatigue definitely worsened in week 4. I don't really feel like getting out of bed; even for normal daily tasks. I would sleep around the clock if I could. My blood pressure is also giving me a hard time. It's been in the high 80's-90's in temperature for over a week now and that's hitting me pretty hard. The octreotide has been great for allowing me to eat more like a normal person, but it doesn't really keep my BP from dropping out 20-30x per day randomly (away from eating). I have been trying to cut back on midodrine but I'd be kidding myself if I said I'm doing okay with that plan. I feel like crap. I should probably go back on it. I'm just being stubborn and wanted to get off something and prove to myself that I can get off any of the medications I take if I have to. I don't like feeling dependent on medications or the doctors prescribing them. I get very stressed and anxious over that.

Yesterday for the first time in several years I had a short episode of an arrhythmia while swimming again. It terminated itself (or the pacemaker terminated it). That used to be common every time I swam so I've avoided swimming for a while. I thought that I had gotten rid of that symptom permanently with both the pacemaker and the beta blocker I'm on but apparently not. I still have my implanted monitor and a pacemaker that can record so I'm well-protected and covered to see any arrhythmia's as soon as they happen. One of my concerns in having chronic Lyme is that it seems to be really after my heart. I'm worried that now that it can no longer stop or slow my heart it will affect it in other ways.......like with lethal fast arrhythmia's or muscular damage.

Tuesday, July 14, 2015

Mepron Week 2: EXTREME anxiety

Well I made it through my 2nd week of Mepron and Zithromax, but I'm not doing well. I have over-the-top anxiety and insomnia. I haven't slept for more than 2 hours for the past week. I've tried valerian, hops, l-theanine, GABA, lavender, lemon balm, passion flower, ashwagandha, valerian, rhodiola, chamomile, magnesium, Orchex, benadryl, and more. NO success whatsoever.

I've been running excessively. I call it exercise OCD. It has happened before on several antibiotics. I can't calm my mind with anything so I just want to run and white out/not think about my life. The other day I ran about 15 miles. I still couldn't sleep. My theory is that my cortisol levels are in overdrive and that's why it's impossible for me to calm myself. That's also why my BP is not completely out of control despite weather in the 90's. I'm still having severe drops, but usually I'm in the ER after several days in the 90's and this week I've been able to avoid that. My meds seem to work somewhat and so do fluids.

The anxiety is completely misplaced as well. The other day a bear charged me. Yes.....again!!! I screamed instinctively and it turned and ran at the last second; changed his mind apparently. I had no fear from that incident but later on while I was trail running on a mountain I've been running on for 20 years, I almost had a full panic attack. I was sick from low BP and overdoing it and instead of just dealing with it like usual, my thoughts were that there were bears lurking waiting to kill me. Completely irrational and unlike me. 

The anxiety is my main issue but I'm also having noticeable increases in pain. My joints and muscles hurt. I normally don't get a lot of pain. I have a LOT of pain around my pacemaker shoulder. I actually thought I might have torn the generator away from the muscle or something. I also am feeling pain from shots and IV's. HIGHLY unusual. I normally have no pain sensation at all in most parts of my body.

I can't take the anxiety much longer and I had backed off of herbs when I started Mepron/Zith but I have to add them back since anxiety/insomnia/stress herbs are not doing a thing for me. So today I added back A-BART and CSA. I'm also taking trace minerals, a liver tincture and lots of magnesium. I hope this calms down. I really don't want to back down!

Tuesday, May 26, 2015

ER Experience

Yesterday I ended up in the ER again. For many weeks I've been struggling to eat and drink because my BP keeps plummeting causing severe nausea and I vomit almost everything up. Yesterday was no exception. It's been very hot out and in order to get a break from my symptoms, I run........a lot. Several times per day I run 2-3 miles. A combination of vomiting and running is not good when you have dysautonomia, unstable BP, and cannot drink your recommended 3-4 liters of gatorade per day for several weeks on end or eat enough to make up for the calories you're burning.

So in the morning I had taken my meds as usual with some sips of water and started vomiting yet again. The only recent change that's completely new for me was a switch in the brand of midodrine I received from Mylan to Global. I don't know how much of my medication was actually ingested because of the vomiting. A few minutes later I started to get pounding in my head and while lying down my BP was running high. That's extremely unusual for me; even when I'm on all my meds in max doses.....including midodrine which you aren't supposed to lie down on. I was getting readings of 128/108 but when I'd stand up it would become undetectably low within seconds. My vision and hearing would fade out, occasionally I'd completely black out if I'd force myself to continue standing, and when my BP reading came back, it was in the 60's/40's. A huge sudden drop.

It's common for me to have an issue like this at home and then get to the ER and the situation cannot be replicated. That results in doctors either doing nothing whatsoever or focusing on something unrelated like T-wave inversions on my ECG. I had already been waiting out severe symptoms for many days because I wanted to be absolutely sure that I was going to get some help when I went in. By the time I decided to go, I had called a relative and realized I was slurring my speech again. That has happened many times over the past several weeks as well.

I knew there was an urgent care center which stated on their website that they used IV fluids for rehydration purposes. I called them, explained my situation, and they said they could likely treat me there. It took me several hours to get there. At the door after filling out their form, they refused to see me or even let me see a doctor/NP because of my pacemaker and the "complexity of the situation." So basically even though my pacemaker was not involved, they were discriminating against me solely because of it. I was pretty much enraged at this point! I cannot get help from the ER. That's why I struggled all morning to drag myself up to urgent care. I was still slurring words. What the hell was I going to do now?

Reluctantly I dragged myself into the ER where I've had very bad experiences several times. If I had gotten the same doctor that I had last time, I don't know what I would have done. Since I've had problems in the past getting IV fluids when I clearly and desperately need them, this time I brought my cardiologist's notes. Printed out it was 11 pages!! I also had photos of my blood pressure monitor at home. I had articles saved on my phone as well stating that the treatment for acute hypovolemia is IV fluids and that a low pulse pressure (which I was getting at home) is an indication of that.

The ER took me back very quickly and hooked me up to an ECG. They did not ask me about my medications again and the list they had on file was very outdated. Within a few minutes of lying down, my pacemaker went off and shot my rate up to 160. It remained like that for over an hour. At first an entire team came rushing in and I thought they were going to shock me or something. I had to quickly explain (with my still slurred speech) that my pacemaker is supposed to do this, that my BP is completely uncontrollable at home and that when this happens and I cannot gain control at home my cardiologist told me to "try to get IV fluids to feel better" even though most of the time doctors won't listen to me whatsoever at the ER. I told them that I'm a runner, I'm supposed to be drinking 3-4 liters of fluid per day to keep my BP up, and because of vomiting I've barely had any fluids in days. I was upfront about my frustration with past ER situations. I explained that I have autonomic dysfunction and I cannot control my BP on my own and handed them the notes from the large hospital that I go to for ongoing management. I was very upset by my inability to pronounce words correctly but I knew if I started crying they'd probably try to force xanax in my line and say everything is an anxiety attack. So I remained very calm.

The doctor I had was very young and he didn't question me whatsoever. He had them starting lines for two simultaneous bags of fluids as soon as I got there and ran only basic blood work without any unnecessary testing. I was on continuing blood pressure monitoring and it was all over the map from undetectably low to 130's/90's. It was more common for me to be in the high range. When my pacemaker went down to the 120's, which oddly matched up exactly with the time the two bags of saline finished, they checked on me, let me go to the bathroom and said they'd call my doctor to make sure it was okay to release me. I was now able to speak clearly without slurring words. They couldn't reach my doctor, but they spoke to someone else there and apparently he cleared me to leave.

This will be the second time in one week that my cardiologist was contacted by another doctor on my behalf. On Friday I was already crying at an appointment with an ND due to severe unrelenting symptoms the previous day and all that morning and she called and spoke to him. I knew then that I couldn't last much longer in that state without some type of help to get things under control. If I'm in tears at a doctor's appointment, I'm not being dramatic or exaggerating. I don't need a therapist. I am seriously struggling and physically ill.

This was the first time ever that I was able to get help at the ER. Appropriate help. The doctor was young enough that he hasn't had a chance to develop a condescending arrogant attitude yet. The pacemaker helped me out a lot. If I didn't have it and it wasn't going off to 160, I would have gotten no help whatsoever again. They would have assumed I'm just drug seeking for saltwater or whatever the hell they think I'm doing requesting plain saline and NO medications whatsoever.

Friday, May 8, 2015

Hot Weather Doesn't Mix with Dysautonomia

This week has been so tough for me. Pretty much every single night I'm waking up with night sweats, nausea, vomiting and undetectably low blood pressure. Every time I eat, the same thing happens. So I haven't eaten or slept for 90% of this week. I've still been forcing my running. I started that nearly 4 weeks ago (3-6 miles per day) to try to get myself into maximum conditioning to help out my blood pressure for this summer. I've also been taking all my medications (mestinon, midodrine and bystolic) on schedule along with 3-4 liters of fluids, compression, and up to 10g of salt. I've tried caffeine, guarana, licorice, ginseng, monster drinks, etc. Nothing is helping. I'm miserable. I have no quality of life whatsoever.

Today I hit an all-time low. I was nauseous this morning so took my meds on an empty stomach and went out running to raise my blood pressure like I always do. Shortly after running, as I was trying to discuss Lyme (of all things) with someone who was just bitten today and needed to figure out how they were going to convince a non-Lyme literate MD to give them a month of doxy, I realized I was slurring my words. I couldn't pronounce things correctly. What the hell? I hate my life. I felt like an idiot. I went in a bathroom and cried. Eventually I regained my composure and pulled it together enough to eat something. About an hour after I noticed the slurred speech, it stopped.

The rest of the day I continued to feel like crap. Like always. Very tired, overheated (it was 92 degrees today) and frustrated with my whole life. I got home, ate a small piece of gluten free pizza (lying down because I can't handle carbs). Sure enough I started to feel my blood pressure drop from just a semi-normal portion of food. The above was my reading.

Earlier this week I knew I was heading downhill so I had already called my autonomic specialist's office. I hadn't slept in days, was barely eating and needed to figure out what to do with my blood pressure at night. I was asking about taking a dose of midodrine at night because I need to get some sleep. I had already tried all my other options before bed. My doctor wasn't in, so the nurse asked a doctor who wasn't familiar with my case. Her advice (which she gave to a nurse to relay to me on my voicemail) was that "my symptoms are not due to my blood pressure, call your PCP and don't take midodrine at night." Clearly this doctor put in no effort whatsoever. She never spoke to me and she didn't appear to even glance at my chart or come up with any type of advice that made any sense.

Needless to say I was pretty furious. This happens every single time that I need medical help desperately. My specialist has told me that he doesn't understand why doctors don't take me seriously when I need help at the ER or urgent care; yet his own office does the same thing to me! When I finally did get in contact with my doctor he was somewhat helpful although in the overall picture, my symptoms suck. My quality of life is non-existent and there is no plan about what to do to improve anything. The consult with Mayo? Completely worthless. Apparently whatever treatment or diagnostic ideas they had are not considered necessary by the neurologist who met with me for 5 minutes and wants nothing to do with my case. So I'm at a complete standstill. Well......not really. A complete decline is more like it. Doctors are probably just counting down the days until my BP drops permanently so that I'm no longer alive to keep harassing them for help.

I'm so aggravated. It would be one thing to live with these symptoms if they were well controlled. Let's see any one of my doctors try to function with blood pressure dropping like mine does. Most people wouldn't last one day with these types of symptoms without heading to the ER......let alone 4 years. I have absolutely no control of my symptoms and nobody cares. Why should they? They aren't the ones that have to live with it. They speak to me for 5 minutes and then put it out of their mind and go on with the rest of their day. Meanwhile I can't even stand up half the time and am left to ponder how I'm possibly going to spend the rest of my life like this with no hope, no cure, no effective treatment, no way to live a productive or normal life, no way to pay my debt, work in my field, or even complete normal daily tasks. Am I depressed? Yeah. And no I don't need a pill to cover it up. I need a real treatment for real physical symptoms.

Saturday, April 11, 2015

My First Experience With Rocephin

Well I'm going on almost 4 years since my initial infection. The infection that has pretty much ruined my life in all ways: health, career, emotions, personality, financials, etc. My heart over the past several months has continued to worsen. The good thing about having a pacemaker is that it tracks and records everything. It knows how many PVC's I have, how often my BP drops to 0, how often I'm in heart block.

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

Acupuncture and Salt/C

Wow......something set off one of the worst herxes I've ever had in my life the other day. I had gone to my LLMD who wanted to try some acupuncture points on me. It was the first time I'd ever tried acupuncture. I wouldn't say I was ever 100% against it, I just wasn't sure if it could be beneficial for bacterial infections or heart arrhythmias.

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.

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.

Sunday, March 15, 2015

Compassionate, Doctors that Listen Make a Tremendous Difference

I've been put through the ringer with doctors since getting sick 3 years ago. I've had doctors tell me there is nothing wrong with me, there's nothing I can do about my symptoms and that I can't understand anything they have to say because I don't have MD after my name. They've called mediators into the room like I'm a psych patient, told me I have an eating disorder, asked me if I take cocaine, asked me if I eat, looked at me with tremendous skepticism as if my symptoms are completely fabricated, told me there's no way for Lyme to persist after a short course of doxy, refused IV fluids when I've been vomiting all day with undetectably low BP, insinuated I'm too young to have heart problems, and much more.

The situation is extremely frustrating and many times I've wanted to give up on even trying to get medical help altogether. I don't want to keep going to doctors who have no desire to help me. It's like they see a young, female patient and assume that medical symptoms are unlikely and the more logical explanation is hypochondria. I don't want to keep fighting for help for legitimate medical symptoms. I don't want to have to prove everything I say and justify and argue that chronic Lyme does exist. I can't do it!

That being said, I cannot emphasize enough how much it means to a patient with an unusual set of symptoms to finally have a doctor listen to them, acknowledge and objectify their symptoms and try to help. In my case that's been two ND's, a TCM doctor and my electrophysiologist. They have not dropped me because I'm an unusual case (yet). They have not insinuated that my problems are psychological (which has absolutely no objective basis whatsoever in my case), and they keep trying. That prevents me from completely giving up. It gives me a sliver of hope in a situation that's very close to being completely hopeless.

I don't think anyone truly knows how much this is affecting me and how much I miss my normal life; a life that I will never get back. Unless you are in a similar situation with chronic illness, you couldn't possibly understand what it's like to lose your ability to work in a career you've worked your entire life for and then didn't even get a chance to start, or what it's like to struggle with just getting through the day and the daily tasks that entails in your 20's.

Travelling for the First Time Since I've Been Sick

Last week I went away for the first time since I got sick in 2011. I was so nervous. I was flying across the country and staying with people who I know pretty well, but not well enough that they are aware of the full extent of how sick I get from autonomic dysfunction on a frequent basis. I knew this was going to be a challenge. I was going to need to try to hide my symptoms for an entire week 24 hours per day.......that's nearly impossible when your BP is 0, your heart is flipping out, and you're breaking out into sweats.  

The first obstacle was getting through security with a pacemaker. It's MUCH easier than I thought! They checked me less than they did those without pacemakers. I stood in a machine and sometimes they pat you down, other times they don't. It depends on the airport.

Another issue was liquids on the plane. I mainly take all heart/BP medications right now. A beta blocker for my fast heart rate, midodrine for low BP, Plaquenil for Lyme, and Mestinon......my liquid. Mestinon is the one I've been relying on the most lately for low BP. I packed it in my checked luggage because it was over 4 ounces. It exploded in the bag. Likely from pressure we think. So I had to go an entire week without it. I made it, and I had fun, but it was not easy. I went off all my herbs because they weren't easy to pack and I didn't want to be forced to throw them out at the gate. I was also in the 3rd week of Plaquenil.......a notoriously bad herx week for me.

Other people don't know my triggers for dropping BP. Eating is one of them. So several times we were all going to go out to eat and I'd be internally panicking because I knew I'd have to make sure that I ate only protein or salad or I could have an issue in the restaurant where my BP dropped out. The food was very good though! They had gluten free pizzas, sandwiches, huge salads, sugar free frozen yogurt, etc. It was like heaven for a Lyme diet. Of course every night I'd wake up regretting that I ate. I'd literally be vomiting all night long from a BP of 0. Many times I had to crawl across the floor to my med bag and lie on the floor guzzling electrolyte water and midodrine tablets until it raised back up enough for me to stand.

I did a LOT of running and walking while I was there. That's actually the best part about this destination. Cars are not allowed inside the town so you have to walk everywhere or take a bus. I opted to walk. I ran up to the
photo location almost every day. It was beautiful and it calmed my mind and worries.

The town sold oxygen in every single store. It was like a spray paint can with a mask on top to be used for people experiencing altitude sickness. Surprisingly, I didn't feel any effects from the altitude. I think it's because I'm used to feeling sick every day. I wouldn't even notice altitude sickness because my autonomic dysfunction and Lyme symptoms are a lot worse.

 I felt crappy MANY times and was crying just wishing that I could feel normal so that I could fully enjoy the beautiful place I was visiting and may not ever get a chance to go back to. However; I'm very happy that I went. It was a beautiful place and even though I was sick several times, I would have been just as sick if I was home.

Sunday, February 22, 2015

I feel like I'm settling

So this hasn't been a good week for me. I had a great day the other day after a glutathione IV. I was able to go running for the first time in weeks. My BP didn't drop. I didn't get snapped by my pacemaker. I got my usual glimpse of normalcy before my health took a turn for the worse like it does every week. I'm exhausted, my pacemaker isn't even noticing when my BP is in the 60's/30's and I can barely get up. I'm miserable. I'm dreading every minute of every day. I don't even want to get up, let alone try to run (which I normally do as much as I can). I have no motivation to even try anymore because whether on or off my autonomic dysfunction meds, I will still feel like crap and have no control of what my heart or blood pressure decide to do at a given moment. It's frustrating and physically and mentally exhausting.

Something else has been bothering me too. Despite the fact that the medications for autonomic dysfunction aren't even working, there's another reason I don't take them routinely. I feel like I'm settling. To the surprise of several people, it's not only me that thinks my health problems are due to Lyme. A neurologist at an anti-Lyme university hospital admitted it as well after I had pretty abnormal test results. So by taking medications for individual Lyme symptoms I feel like I'm taking the easy way out by using band-aid meds to mask things. They're not curing anything. They're covering things up. On the other hand, I'm not new to treating Lyme and I've tried everything I can afford and access to treat that. Herbs, oral antibiotics, supplements, etc. For some reason nobody has ever tried to get even the standard one month of IV Rocephin covered for me despite a positive Lyme test and documented heart block. I don't quite understand that, but I can't force people to do things they aren't willing to do.

I had similar feelings right before I got my pacemaker. I knew it would not cure me. So did my cardiologist. My fear of the pacemaker wasn't the surgery........it was that I was going to artificially keep myself alive only to suffer the rest of my life with debilitating symptoms that are completely preventing me from living like a normal person. I don't want that. I don't want to live like this or get worse for the rest of my life. I don't think my cardiologist even realizes how bad I feel daily. The last time I tried to describe some of the symptoms he told me "we can't expect perfection." Perfection? I'm so sick most days that I wish that my heart would have stopped for good in August. This is not a life.

Part of my current morbid attitude may be due to some of the changes lately. Bystolic.......that might be depressing me like Toprol did. It could also be Plaquenil setting in. That is a tough med for me. I'm not exactly sure why. It's definitely not the strongest of the Lyme meds for most people.

I don't know what's going on, I just know I don't feel well physically and it's getting to me emotionally. There is never anything I can do to improve the situation no matter how hard I try or how many medications I take.