August Part 2 – To Be Believed

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Okay. I have been slacking on my writing. I just don’t have the energy right now. Ironically, when I was a vegetable, I seemed to write a lot more. Maybe it is because I never slept. All I want to do is sleep these days. I can’t wait everyday until it is time to be able to get a few hour nap in.

I have been trying to detox as much as possible, doing my juicing, which seems to help a lot. I am wondering how I would be without doing my few days of juicing this past week, as I haven’t been doing so hot. Even without the sugars in my diet, I have oral thrush in the back of my throat and tongue. I can only imagine if I have this going on, how unhappy my gut is. So, I have been really keeping up with my probiotics and FOS, a supplement that helps feed the “good gut bugs”.

Friday was my long awaited electrophysiologist appointment. I went to work for an hour or so, then headed home so Dave could take me to my appointment. It is such a pain that I cannot drive that far (maybe an hour away?). That means I need to rely on him for all my trips.

When I got to my appointment, it was like a set up for neurological failure. To get into the building, it was a revolving door. I basically pushed Dave into the side of it, trying to get through. Then, the elevator. Some walking, and then of course the odd lighting. These things sound so simple, but they are quite the tasks for me. I was just about toast. I could feel my body rocking back and forth to my heart beat. I try to ignore it, but I know that it is clear as day to others who look at me.

The nurse came in to take all my vitals and do an EKG. My blood pressure was low, and my heart rate was just above normal. I wrote and brought a medication list to bring with me, and it still took at least 20 minutes to get everything all entered into their computer. On the upside, I have had some assistants take nearly 40 minutes to enter in all my prescriptions and supplements. I told the man that I was going to put him to work, but I would give him a gold star on this one.

I was right, the doctor that came in to see me was the doctor that had been there while I was getting my Linq monitor placed. I thought that was promising, as he wasn’t a dink then, so I had hopes when I had a longer chance to speak with him that he wouldn’t end up being like so many other doctors that I have dealt with on this long journey.

He went over all my information that was given to him from the heart monitor, and symptoms that have gone along with it. Dizziness, lightheadedness, syncopal spells, temperature sensitivities, feeling like my heart is beating a million miles a minute. How completely discouraging it is that I am not functional.

I left Lyme out of it, as I believe every patient should. The reason being that you are there for these symptoms that you want fixed. You are not there for Lyme treatment. Once you say the words “Chronic Lyme”, or anything of the sorts, you have a pretty big chance of having the doctor immediately dismiss anything you say. You are then some hypochondriac, some crazy person, some drug addict.

That being said, it is kind of difficult when you hand them a nearly two page list of medications as they will ask you why, but I think it is important to not focus on it. Tell them that is not why you are there and it is a separate issue if you have to, even if Lyme and coinfections are the direct cause of your issue and you know it. Treat the symptoms.

I discussed with him Dr J’s belief that I suffer from dysautonomia. POTS. I had told him that I have been prescribed Midodrine. Although it has improved my condition some, it has not fixed my problem, and some days it just plain doesn’t work at all. Just another pill to add to my regimen.

For those of you who are not familiar, in a quick definition, your blood pressure drops upon standing, and your heart rate elevates. Someday I will do a blog post about this topic. Once I get on the ball with things again.

He examined my feet, and told me that he had never seen anyone my age’s feet look as bad as mine do. He said that he generally sees much, much older patients with the feet issues and appearance that I have.

Yup. Purple and blue. They look as if they are just going to fall off, and when you touch them, it takes a long time for the color to come back to them. It is blatantly obvious that they are pooled with blood, yet Dr Dumbass’s office cannot give me any offerings other than suggestions of being an addict.

He felt my legs and he could tell the temperature difference from my calves down. My feet are freezing. He was also surprised that my legs have had so many vein issues at my age.

After our chat and a quick examination, he completely agreed with Dr J’s POTS diagnosis. He told me it really should be a clinical diagnosis, and wants to continue on with treatment, change my medication, and add some things that he believes would be beneficial to me. He said it is kind of a trial and error sort of issue to see what works for the individual as it is very hard to treat.

First, the new medication, Florinef. This particular medication helps you retain salt and water (great, I will probably gain weight..), as dehydration and low sodium levels are a common issue that can cause episodes. He described this medication to me as a daily pill similar to a lactated ringer. Now that I think of it, I never passed out when I did my lactated ringers over the time I had my IV treatments.

I think he may be onto something. We are going to play around with the dosages, and see if it helps any. I need to do some more research about this drug. Side effects, and general information. Remember folks, knowledge is power, and you should always know what you are putting into your body.  I know it depletes potassium and magnesium, so these are two things I should look out for.

I was pleased to hear that this medication should not interfere with any of my antibiotics, neurotropics, or supplements. That is always a concern. I also brought up the fact that I have been repeatedly been pushed to be put on a beta blocker, and I refuse. I was happy to hear that my cardiologist was incorrect for saying this to me as it wouldn’t be the correct course of treatment for my condition. Ha! So there!

So… new medication to try. He emphasized the importance of being well hydrated and have salt in my diet. He knows that I am still fairly debilitated and can’t really exercise, so he wanted me to get a recumbent bike to get my legs moving again. He said it does help many to get exercise and be up and moving, so this would be a good option to start out with. I no longer have muscle tone in my legs after these few years of couchin’ it, and he told me that it would help get the blood flowing again having more muscle will help the vessels in my legs and feet pump more easily.

Lastly, he did actually bring up Lyme and coinfections. I know I have just mentioned to NOT discuss this, but the primary focus of my appointment wasn’t revolved around this issue, I didn’t bring it up within the first five minutes of our appointment, nor did I associate the dysautonomia with having Lyme or other tick-borne diseases. This was all after our game plan.

What comes first? The chicken or the egg? Perhaps treatment of this will help the Lyme treatment, or perhaps the continued Lyme treatment will help with the dysautonomia.

He told me that he believes this might be a neurological issue and at the moment my autonomic system isn’t working at all right now. However, he is very hopeful that this will all get better and not be something I will have to live with forever. Any sort of positivity and hope is good!

I left the office feeling really good. I was believed. I was not poo poo’ed like I have been, and felt like this is finally being addressed and taken seriously. The electrophysiologist wants a follow up in three months, and my fingers are crossed that I will have good news to bring him during my next visit. Being believed is awesome when you are dealing with such a controversial disease and are constantly treated terribly by mainstream doctors. I was believed.

As soon as I got home, I fell right asleep for several hours to recoup from my appointment and the trip. Once I got up in the evening I decided to push my limits and go to the yearly Hospital Street Fair in my town. It is basically a giant thrift shop. I love it, we get Dave’s wardrobe there every year for like $5. There are always some neat finds.

Within minutes, I felt clouded, and “floaty”. I had to sit down while Dave looked around. There was a little band playing and a ton of chairs, so at least Dave wasn’t in a mad dash to find a place for me to sit. Even while I was waiting for him, a wave of dizziness hit me like a ton of bricks. Although Dave quickly made his round to check things out, I kept thinking to myself, don’t pass out, don’t pass out. I didn’t. Hooray. I didn’t need another Lowe’s incident within a week.

Yesterday and today, I have been in a tremendous amount of pain. I am not really sure what is going on. I am having the same feeling that I do when I am on heavy antibiotics, the stabbing pain in my stomach. Two particular spots, kind of to the right of the center of my abdomen, and more toward my left side. It feels like a sumo wrestler is crushing my chest. Last night I barely slept, there was no possible way to get comfortable, or try to forget about the pain enough to get a good night’s rest.

A few days prior, I had severe calf pain, enough to nearly put me in tears. It was odd. From the time I went to bed and the time I woke up, several small blue veins in all directions popped up behind my knee. No idea. They felt really tight. I spent a lot of my time with my feet elevated as high as I could on the couch.

I was a bit fogged, stuttery and ticky at work today, but finished everything I needed to and I at least managed to walk to the backyard and check out our garden. Everything is now turning to seed, but I think maybe our pumpkins will be a success this year as they are still going strong. 🙂 🙂 I plan to cook a big dinner that will last for a few nights.

My Dad was really nice and ordered me a recumbent bike, and it should be here sometime this week. I am excited to see how I feel and if there will be improvements. Let’s hope so, this sh*t is really getting old.

Happy Sunday!

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