Sunday, October 19, 2014

I Hold a Grudge

Rant alert. Over the past month, I've been thinking about how people have started to treat me differently since my heart paused in August (first time it was caught on a monitor), and I got the pacemaker. I've been sick for 3 full years. Throughout that time, I've repeatedly told doctors, acquaintances and family members of my symptoms........particularly heart ones. Do you know how many times over those 3 years I was blown off by everyone except 1-2 doctors and my immediate family? How many times I was told that everything could be cured if I'd try massage, accupuncture or stress relief? Too many to count and I'm very angry about it.

It's like people hear the words "chronic Lyme" and think "Oh that's not serious, she's just exaggerating. Lots of people have Lyme. It's just some joint pain." NO!!! It isn't!!! Hate to burst your bubble guys but you are all at risk to get this just as much as I was and ignoring me and pretending this doesn't exist isn't going to protect you from it. You don't think my symptoms or those that others with Lyme have are serious? You don't want to hear about it? You think that massage can help my heart to stay in rhythm, stop my fevers, raise my BP, heal my autonomic nervous system? Okay.......I hope you never get Lyme, but if you do, maybe you'll realize how insensitive and hurtful those comments are to someone who has chronic Lyme; someone who has legitimate and serious medical symptoms and needs legitimate medical help and can't get any because so many doctors have the same attitude as you: an attitude that stems from pure ignorance.

Since getting the pacemaker, nobody has said a word about massage, stress relief or acupuncture as a cure-all to my disease. Most people are no longer doubting what I say regarding individual symptoms. I'd bet that if I needed to see a doctor now who doesn't know me, they'd be far less likely to blow me off and dismiss my symptoms or attribute them to anxiety and depression. Why is that? It's solely because of this little pacemaker device jutting out of my skin and the reputation of the doctor who implanted it; not because of anything I say or do. I'm still a piece of paper and a test result to most doctors (and even some acquaintances) not a human being. The opinion of another doctor combined with a machine.......a pacemaker.......is more valuable and taken more seriously than my word, and that's very sad. I knew exactly what my heart was doing for 3 years. I was accurate. However, in order to get help I had to prove everything I said objectively. How many people don't have the physical or emotional energy to do that and therefore never get appropriate help? Thousands? Millions?

So now that most of my friends and acquaintances are no longer blowing me off, everything's fine right? No. I hold a grudge. I don't forget easily. I will never have the same relationship with the acquaintances that only truly believed that my symptoms were real after a doctor that they've never met confirmed my suspicions and treated me. These people know me!! They should have believed me! Not some stranger they've never met just because he has MD after his name! I needed support rather than suggestions of treatments that had absolutely no chance to help me. News flash: when you suggest a treatment that does not match up to the seriousness of a persons' symptoms it's belittling, trivializing and hurtful. So don't do it. Think of it this way: If you come to me one day and tell me you have cancer, MRSA or diabetes, how would you feel if my response was "You're exagerrating. plenty of people with your disease feel completely better with Reiki or massage. Why are you even bothering with chemo/antibiotics/insulin?" Does that sound logical or appropriate? Yet plenty of people with Lyme face this "advice" from friends and even doctors constantly.

I'm no longer going to tell these people how I'm doing. They didn't care before and I can't be certain if they truly care when they ask me now or are just trying to make up for their inappropriate assumptions from the past. If they really want to know how I'm doing they can try searching through the hundreds of Lyme blogs that exist and figure out which one is me.

The fever last week accompanied by severe pain was a Lyme herx and not a pacemaker infection. How do I know that? How else? I gambled with my life once again by waiting it out and trying my normal herx remedies to see if it would help: alka seltzer gold, a few doses of Quina and Mora (added into my consistent Lyme protocol), Benadryl and tons of fluids and salt. I knew if I called my cardiologist or anyone at his office, there would be no way that a "Lyme herx" or chronic fever would cross their minds. They would likely attribute the fever to the recent pacemaker and remove it. I really need this pacemaker and I don't want to go through another surgery over my "normal" chronic fever and herx reaction to starting a new med for Lyme. The herx remedies worked and the fever ended by the next day.

Another problem this week has been with exercise and my heart. When I walk or jog and get my heart rate up to over 170, I start to feel an irregular rhythm hit so I stop moving. The irregular rhythm hitting near my maximum heart rate is new since the pacemaker. After I stop, my pacemaker snaps me.....HARD..........and gets me back to my paced maximum of 155. I don't know what that is but it's scary and makes me fearful to exercise to the level I normally would. I suspect that I'm being paced at a high voltage ventricularly because my pacemaker is detecting a sudden drastic drop in HR and may see that as a pause. I used to drop from near 200 to 30's in a second or two during exercise prior to the pacemaker. I couldn't flag my worst episode on my heart monitor because I didn't have the flagger with me that day, but I have flagged two less severe but similar episodes since then. If I don't hear from anyone, I'll assume it's normal.....I'm trying to be more trusting of the cardiologist.

Sunday, June 1, 2014

A-L herx Byron White

Severe anxiety, shaking chills, increased heart palpitations, inability to calm my mind and body, emotional instability, dizziness. All part of my A-L herx. It started the night I switched to it at 15 drops 2x per day (substituted for A-BART). It started with a night sweat which I NEVER get. The herx is still going strong 5 days in.

I'm not backing down yet but relax and sleep, magnesium, B vitamins, melatonin, valerian, etc. is not calming me down. I reacted like this to a few antibiotics but this type of clear severe herxing is rare for me on herbs.

I did not think that A-L would be a tough one for me to take. Usually I don't react to Lyme-specific herbs and antibiotics. Babesia meds and herbs give me stronger reactions but suprisingly I never react to A-BAB. A-BART is a good one. Not too strong of a reaction but it keeps me from worsening. I am not satisfied with maintaining at such a poor level of health so it was time to switch after many months on A-BART. I decided on A-L and it seems to have been a good choice for me.

Surprisingly, most people I've come across seem to think A-BART is the strongest of the Byron White formulas. Not so in my case.........A-L is definitely giving me a rough time. Worse than Cumanda. I may have to back down.

10th day in 6/4/14:  I still can't eat, can't sleep, my heart is so out of control (between 40 and 120). I have compulsive racing thoughts/OCD. I want to give up or back down but I can't bring myself to do that. I am so stressed that I don't think I can do this much longer..........I just want some relief. I want to feel better. I tried valerian, relax and sleep, benadryl, rhodiola, ashwagandha, magnesium, B6 shots, etc. NOTHING calms me down. Eye twitching is starting again too. Restless legs.

Saturday, May 24, 2014

Neem Capsules

So I've been over-the-top frustrated for the past several weeks. I feel very very sick and no matter what I do that never changes. I have been trying everything I have access to over the past 3 years without any success.

As the summer approaches I realize that It's going to be completely impossible for me to function. I have absolutely no control of my blood pressure now let alone when the heat starts working against me. Even with high dose midodrine my blood pressure is dropping into the 60's/40's. Now my heart rate is also getting low. I flagged a HR in the 30's on Thursday with my implanted heart monitor. I feel incredibly weak, lightheaded, dizzy, etc. I can't function.

I was able to ask Stephen Buhner for some ideas about what to do for heart block and low BP. He is great about getting back to people very quickly. He mentioned licorice, hawthorn and caffeine. Two naturopathic doctors have suggested those to me also. I've taken all of the above in addition to trying mainstream meds like midodrine, florinef, beta blockers, etc. plus fluid and salt loading. Nothing seems to work and I think it's an absorption issue.

I was browsing the health food store the other day and saw some Neem capsules. I decided that it's worth a shot since I've tried pretty much everything else. I know that Horowitz suggests Neem as one of the herbs to try for Babesia. Usually capsules do nothing for me so I wasn't expecting much. A month's worth of capsules was under $10 so it wasn't much of a gamble.

I am taking 3 capsules (1425 mg) per day. Lately I very rarely get a clear herx reaction to anything; not so with Neem. Day 2 I woke up with my typical clear herx symptoms. Body aches, flu-like swollen throat and dry eyes, 101 degree fever, severe/extreme exhaustion to a bed-bound level, etc. Wasn't expecting that...........but sadly even though I feel horrible and cannot stand due to my pre-existing BP issues alongside my new increase in Neem provoked flu-like herxing, it cheers me up when I react to something. At least I know it was absorbed and has a chance to work.

Neem supposedly has tons of uses. The traditional uses of most interest to my situation are malaria, heart/cardiovascular, increasing immune activity, liver problems and fever.  Neem is antiviral, antiparasitic, antibacterial and antifungal so I should get a wide range of coverage with this herb.

From what I've read, it should not be used in children or pregnant women.


Tuesday, February 25, 2014

Low BP

Okay, so this could be part of the reason that I feel like crap constantly. I thought it was getting low like this from beta blockers, but apparently not. This reading was on Sunday night and I hadn't taken any Betaxolol (beta blocker) since Friday evening. My BP monitor is working. That was the first conclusion that the electrophysiologist thought of; that my monitor must be inaccurate or run low since my BP is always normal when I'm in his office (under enormous stress). Mine runs 14/9 points higher than the doctors' readings. So that would make my 80/40 a 66/31 if they were to take it when I feel like I did on Sunday.

I wasn't having an irregular heartbeat at the time so that didn't factor into my low BP. I had been "cutting back" on midodrine like the EP said to because of my blue feet issue. I was down to 1-2 per day. Most days I only needed one pill at about 1:00 p.m. Occasionally I needed a morning dose to get up and be able to drive safely.

Over the weekend I had been very frustrated and irritable so I forced some walks with my dog and brief...........very brief...........spurts of jogging. My HR easily climbed to 180-200 within seconds and stayed that way longer than it should. As my heart rate dropped, I started to lose the feeling in my arms and legs and get severe tingling and exhaustion. I called these events in to the call center with my heart monitor and was told "you're all set." So apparently it's nothing too dangerous.

One time I did get a call back a few minutes later from the call center to ask me what exactly I was doing at the time of the event. Hmmmmmmmmmm......one time I was outside playing with kids and another time I was walking my dog with less than 10 seconds of running. I'm not morbidly obese or completely out of shape. I used to run 10 miles easily. Whatever this fast heart rate is, it isn't normal for me. 

During the above low BP episode I wasn't doing anything at all. I suddenly became so tired that I felt like I was going to drop. Then came a dizzy spell. I tried taking midodrine and drinking a huge container of V8 followed by guzzling gatorade and then resorting to caffeine. Not one thing helped at all.

Eventually I just went to sleep. I had to once again cancel my plans for the evening since I could not drive with that amount of dizziness. I fell asleep for about 16 hours straight without waking up. I'm really tired and not the type of tired where you sleep and wake up refreshed.

My attitude is getting poor again also. I've been slacking on Lyme herbs because if I'm thinking based on how treatment has gone so far over several years, nothing is realistically going to improve. Why do I keep trying? I can't even get a symptomatic drug like a beta blocker or midodrine to work as it should for longer than a few weeks.

Friday, February 21, 2014

Stressed out about my heart.......

Okay, I'm pretty stressed out. This is the second time this week that my heart has felt completely out of control. I think it's just PVC's, but I don't know how to read EKG's (and I've been trying to study for days to figure it out). If anyone knows how to read this please comment. I won't take it as "medical advice."

I met with the electrophysiologist again. I reached my tipping point with the cardiologist after my feet turned blue, my BP was 80/40 and my heart rate was 50 on the new beta blocker (betaxolol). The EP said if I can deal with the palpitations, I can go off the beta blocker.

I have a new monitor in case the sustained arrhythmia returns. The above is what my sustained arrhythmia feels like. So I caught it twice already in the first week of a 30 day monitor. My option if I can't deal with the palpitations is Flecainide since it's unlikely to drop my BP.

Flecainide has some pretty risky side effects like V-fib and death. Not sure I want to try that one............It's supposed to be started in a hospital. My EP did not mention having to be hospitalized to start Flecainide. I think he was intending on letting me try it at home. Unlike the cardiologist, I do trust his advice somewhat. I'm just not sure I want to take any risks. I'm afraid. However, leaving my heart like this feels like somewhat of a risk as well.

An ND has stopped whatever the above rhythm is with magnesium IV's several times, but I don't have access to that around the clock. Oral magnesium no longer helps me. So I don't know what to do. Treating Lyme hasn't helped my heart in several years. Should I treat this symptomatically? If I go on Flecainide, that severely restricts what I can take for Lyme since it interacts with everything.