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 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.