April Part 2 -And So I Wait..

It has been a rough week or so. I’m going to do my best to not be all over the place and make sense in my writing today. This is about as good as it is going to get.

The day before my appointment with Dr S I had a mini meltdown. Okay, it was a big meltdown but I was able to keep most of it inside.

It all started with getting the IV process going. Vitamin C, Glutathione, ringers, Myer’s cocktails. It would have been a great thing to add to my regiments and it was recommended to incorporate these treatments for me.

I had the thumbs up and good to go to do them at home, then within about three hours, I got a phone call that they changed their minds and got a big fat “no”.

I asked for an explanation and they simply told me they decided to not do it for me. I had explained I had done some of these treatments at home before, and I was told they won’t do it. I was told they changed their mind. What the fudge?!

I investigated further.The true reasoning? Aha! This particular doctor that was all thumbs up, ready to go, and let’s help get this girl better “communicated” with Dr. N, another naturopath that I used to see in conjunction with Dr S and my neurologist when I had my 5 months of rocephin IVs. I guess she still has hard feelings for me leaving her as a patient.

So, she took it upon herself to butt in to make sure I did not get these treatments by communicating with some of the other holistic and naturopathic doctors in the area as well to make sure they would not help me.

I am basically on the “do not fly” list for help at the moment. Once again, thanks for being mature, Dr N .*Rolls eyes*.

She is pretty egotistical, and even has a little webpage (well, at least she did at one point), basically sharing how she is the Lyme guru, the hero, and has saved a lot of patients.

She wanted my case to be a part of her story. That she could “cure” me. Let’s be honest, I am a bit of a challenge and would have looked pretty great on her resume.

Do you remember Dr N ??! You should read my whole story. J It will help you out a lot if you are trying to get your ducks in a row, or are dealing with a very careless doctor. EXTREMELY careless to the point of being dangerous.

At that point I was too sick to even advocate for myself, I am glad others intervened, including Dave as well.

At that point in treatment, if Dr S didn’t step in, as well as my neurologist, Dave, I am convinced I would be dead. I am very lucky with what I have been through that I am alive.

Right now things are extremely hard, but I am not dying. Just dysfunctional and certainly not having the time of my life. Like I said, read my story. J

Anywho, she was absolutely furious when I decided to see Dr J. I had never seen a doctor do this, but over the phone she literally threw a temper tantrum like a child, yelling at me and telling me she was the best. Haha. Okay. If your doctor does this, I would advise you to run.

I have a really hard time driving any sort of distance, and I needed to get to the clinic where I get my Depo shot every 3 months. It is about a 15 minute drive, but it wears me out.

I got to the clinic and apparently the only doctor working there quit, and no one called and told me there was no one there who could administer the shot.

The secretary is the only one working there, which doesn’t help a heck of a lot. She made sure I got squeezed in with another local gynecologist, one whom I have seen before. Phew.

I was feeling completely overwhelmed, and I hadn’t even seen Dr S yet. Part of it was pure exhaustion I believe.
I have also started to become very paranoid and anxiety ridden lately. Depression is beginning to set in. I am beginning to feel depersonalized, generally during the day.

This is basically like you are watching yourself from above… hmm.. it is kind of hard for me to explain right now. You are just a puppet and don’t really know what you are saying or anything. You are just “there”, I suppose.

I am not at that Cipro horrible level I once was, but still my mindset isn’t so great right now, even though I am trying to hold onto optimism that this is all bumps in the road on this crazy journey, and as they say, “this to shall pass”. I know it will… but in the meantime it definitely sucks.

Between feeling like I am getting sicker, the fog, the not feeling limbs, having Bartonella feet, and feeling complete exhaustion (I haven’t even been using my recumbent bike which makes me angry because it is right in front of me in the living room), I am just falling the frig apart.

The mind games in my head are so terrible. I always wonder if those are worse than being debilitated. At this point I think a sound mind would be a lot better, even if I can do less and less. Ugh.

That evening, I cried myself to sleep. That hasn’t happened to me in a lonnnnng time. I am almost thinking teenage heartbreaks when this had happened?

Before I fell asleep I asked Dave, “Is everything going to be okay?” You could tell he was a bit heartbroken in his eyes with me asking this, and he isn’t really a show emotions kind of guy, and he told me, yes, it will be okay. He left and took the dogs on an adventure, so I could sleep in peace.

The following day, I had a visit with my favoritest naturopath ever, Dr S. We went over some of my recent testing. The conversation went as follows…

All my neurotransmitters in my brain are shot and as well as my adrenals. He recommended for me to push for epilepsy study when I go back to my neurologist.

I was given a zillion tests for blood work, and I am waiting to hear back on some of the results. There was a lot of things checkered off, so we will see if there is any interpretations on my blood work.

I haven’t been ignoring my writing, but I felt like it was good to at least wait to see some of my results to share with you. What they mean, I am not too sure as of the moment.

Unfortunately from the results that are ready at the moment, some things I believe are “off”, although yet again they aren’t “too off”. One being, I was tested for diabetes.

I am grateful it appears I am okay, but Dr S emailed me stating it is likely I am having crashes during the day, which obviously doesn’t help anything. My iron was high, which was no surprise, and a lot of things like I said were borderline or fine.

I hate this. It is one of those situations you obviously don’t want to have another issue, but you find yourself needing some sort of explanation.

On another note for you all.. SO IMPORTANT!!!!!! When you get handed a blood work slip, ALWAYS research the tests given (or get any test results in your hands). I love Dr S, but sometimes there might be something in a doctor’s mind that they are not sharing with you. Learn this information.

Look up the diagnostic codes. There should be a few numbers/letters with a decimal point. Look them up on google. See what they are truly looking for.

Don’t be in the dark about everything. This is a part of advocating for yourself, and you should have all this information. See what they might be thinking or suspicious of that they haven’t told you.

It is nice to have those questions you may have that they do not share with you right in your hands. Advice for the day. 😉

The game plan at the moment is to treat the antibiotic resistant infections in my tummy and intestines (Hey! At least there is one explanation.. one very big explanation!) .

It is time to make my tummy and low functioning liver happy again. Detox detox detox!I am now on an even stricter diet, which is called the FODMAPS diet. It is meant to not feed the bad bacteria in your stomach and intestines. I eat pretty healthy, but even fruits and veggies among other things are actually poor choices at the moment.

Dr S thought it was a good idea to have the nutritional IV support… but due to my previously mentioned issues, it probably not going to be in the cards for me right now. I might continue exploring this avenue. Right now though, I am just tired and don’t feel like getting frustrated making phone calls.

So right now, I am in a hard place. I am currently too sick to treat Lyme etc. I have to fix the gut infection before I start up anything. And so I wait… Thus far, I think it has been five or six weeks off of antibiotics.

The bad news : not everything is Lyme, Bartonella, Babesia and more, but this is the damage.

After nearly 4 years of treatment for me, the infections are still very much there unfortunately, but there is a lot more to the story. We will put our fingers on it, I am sure. Making my gut happy is so important though to even get started with anything.

Dr S told me that I might get a lot worse again. To the point I could possibly backtrack to my IV progress. I have so much toxins and crap in me that are just stuck there, and of course there is the fun herx reactions trying to get rid of it. Major son of a bitch. Thousands upon thousands down the drain if this happens. I am not going to worry about it. As for right now, I am not well, but I seem to have plateaued in my downfall.

The great news of the day, “I STILL BELIEVE THERE IS A LOT OF HOPE FOR YOU. AND A LOT OF THIS CAN BE FIXED.”

Let’s hold onto this thought. Butterflies, rainbows and unicorns, this storm will pass. I still have faith.

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This is my daily fun stuff. As you can see, this all isn’t good lol. And sadly I forgot to put a lot of things out. I leave pills scattered around the house in order to remember when to take them, and I also have my B12 injections.

I’m putting on my boxing gloves and I’m ready to fight.

On Saturday I slept for 17 hours. SEVENTEEN HOURS! Now, some of you who don’t “get it” say snarky comments… I have gotten it more than a time or two… “I would be that tired if I overslept that much”. Eff off.

Clearly, my body is beyond exhausted and sometimes I don’t find this a terrible thing, as it is allowing my body to heal and is obviously much needed The downside, I feel a bit useless.

The hours I was awake weren’t fun. I was so dizzy with my POTS symptoms, I couldn’t feel my legs, I was completely light sensitive (I made sure my Dad unscrewed the light bulb in the office so my side was dark), and a scary one, my vision became very blurry. I definitely needed this sleep.

During my one Sunday off a month, Dave and I did breakfast, sticking with the FODMAPS diet, trying to remain vegan, and having food intolerances makes it rather difficult to stick to a diet. I know I am going to probably end up adding at least chicken or eggs again. I need as much protein as possible.

The rest of the week has been about the same. Like I said, I haven’t fallen apart anymore, but there have been days I have sat in the parking lot not being able to walk into the store, walk into the post office. Days of unwashed hair, a little extra deodorant.

There was one day that I just needed to go to sleep, so I had to put Olive in the crate since I wouldn’t be watching her. I cried. I never do anything like that and I felt like a piece of crap for leaving her in there for a few hours when I was home.

All I can say is I am doing my best, and it is really hard even though I am trying to hold onto the optimism and keep on kicking ass, my mind really hates me. Wishing you all the very best weekend!

And of course, Miss Olive says, “Hi!!”

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6 thoughts on “April Part 2 -And So I Wait..

  1. So sorry for all you are going through kim. I truly am!! Dr. S sounds like a good person to have on your side . You will get there. One step at a time. Sending good thoughts your way, Hugs, Janie

  2. Miss Olive is So cute! I am sure she understand and she is juste happy you are there. You are a source of inspiration. One day at a time.. . I wish you better days in a near future.

  3. Certainly hope things get better for you! Miss Olive is adorable! I’m newly diagnosed w/Lyme disease and am planning on reading more of your blog. Best wishes!

  4. Hi, my name is Lori. I have just found your blog. I want to share with you the treatment that saved my life. Back in 2014, my heart and kidneys were failing and I knew I was dying. Out of desperation, I left my LLMD, who had been treating me for 3 years. It was 3 years of torture and hell. I was getting worse and not better.

    I found a medical clinic that treats Lyme and all co-infections using an integrative IV approach. They combine natural and traditional medicines along with a ton of other treatments. It’s because of them and their dedication and caring staff that I am alive today. Not only am I alive but I am living again. Don’t get me wrong, I still have bad days but I have more good days than bad

    If you are interested in learning more about the treatment let me know and I will share with you everything.

    Lori

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