January Part 3 – The Long Awaited Appointment


Where should I begin? I had been waiting for this phone conference with my LLMD for what seems like ions. As you all know, things have not been going very well for me, and I have been hoping for a game plan and some answers.

I had sent their office what seemed like a novel, writing down everything that I wanted to be addressed, further testing results that I had done (hormone and myasthenia gravis), and even a picture of my completely messed up face to show how much of a neurological bomb has gone off inside of me.

I was really pleased that the PA was very thorough with me, going over my questions, and nearly spent an hour on the phone with me, without giving me a feeling that I was being rushed. I got off the phone feeling a lot better knowing that she was listening, which is one of the things I have felt has been lacking lately, making me even more discouraged.

She believes that my main issues that are causing my many problems and symptoms lately are the reactivation of Babesia that I have been struggling with since late summer. Anyone with Babesia knows that it is in fact, an asshole, and takes a very long time and a strong fight to keep it under control. Apparently, when I had my last visit to DC, my liver felt somewhat “puffy”. After looking at my blood work, she feels that it is possible that I have an ammonia issue, and we will be testing for that.

As for all my neurological issues, she gave me an entirely different neuro med schedule. My limbic brain is still extremely fragile, and we are trying to get to the point of healing and recovering that part of my brain that has been causing a plethora of symptoms. I will have to wean off certain things, change dosages, etc. A few thoughts on the neurological issues is that my medications are running out during the mid afternoon (when I start to crash and into the evening), as well as sometimes the medications that were once helpful to the body are no longer needed, so it can cause more issues. Does that kind of make sense? Anyways, we are changing it up in hopes that some of my neurological symptoms will calm down, such as numbness, fog, and the sensitivities such as light and having a very hard time in areas that are crowded, with too many conversations around me.

Another issue that she wanted to address was my sleep. My PA asked me a lot of questions, that I personally thought were irrelevant to anything I have been going thru. “Do you still sweat in your sleep?” “Yes, but not as bad as a month or so ago.” “Do you feel rested getting up in the morning?” “No, I feel like I have just gone to bed.” “Do you stay in the same position when sleeping at night?” “No, I wake up in crazy positions, sometimes sideways (lol)” “So the blankets are messed up when you wake up?” “Very.”

She came to the conclusion that I am not getting to the right depth of sleep. She basically said it was like running a marathon in my sleep, and not actually getting any sort of restorative sleep. That is one reason why we are changing up the neuro meds, in hopes that I get an actual restorative sleep, and that should help tremendously with my energy levels.

It was agreed to take the Script Assist, the probiotic/prebiotic combination as Dr S had given to me. She preferred for me to no longer take the chlorestyramine, and take the other supplement, king chlorella instead. Okie dokie. That was also another supplement suggested to me from Dr S, so at least there was no issues with conflicting ideas and having to choose who to follow. Phew.

Because of the strong Babesia issues still, it was decided that I will stay on the exact same Babesia focused protocol. I mean… it technically addresses other coinfections and Lyme, but it really hits Babesia pretty hard. The upside of the same protocol is that I am not afraid, as I have been doing this for a few rounds now, so I know what to expect. I am hoping it will get easier and easier as I go along.

There is a lot of blood work testing that I have to get done. A LOT. I am of course going to do some research on these tests, as I know that doctors will want to test for things that are suspected, but they won’t tell you the “whole story”. I will say if you have any sort of a chronic illness or medical issue, it is so important to actually know what they are testing for, get copies of the test results in your own hands, and just plain do some research. Should you become a hypochondriac about all of this? Absolutely not. But I think shooting in the dark without any knowledge is absolutely foolish, as you really can’t advocate for yourself and you should really know what is going on because it is your body after all . Knowledge is power. And that is my little rant of the day….

I have my work cut out for me on these tests that I am going in to have done. Ready for the list of the giant donation to the vampires? Here is goes! The basic CBC and complete metabolic panels, ammonia plasma, carnitine, CoQ10, copper, ferritin, serum iron, Vit B 12/folate, Thiamine B1, Vit B6, Vit D, zinc, gabapentin, lamictal, cortisol, Free T3, Free T4, Reverse T3, Haptoglobin, HSV 1/11 IgM, ACTH. Yup. Donation to the vampires.

I am about half way thru my second week of treatment. I will say it has been much easier than my last round, but not without symptoms. My brain fog hasn’t been as bad (I can see clearly nowwww the rain has gonnnnnneeee!), but the lights are killing my eyes, I am still getting a little dizzy and lightheaded, my connective tissue in the back of my head is hurting a lot, and I am getting a lot of numbness in my feet and legs. My arms feel like dead weight. Luckily, my stomach has been okay, with the exception of right before bed, it feels descended and sore, and the nausea kicks in. At least this is only right before bed. Nausea just plain sucks. Especially the kind that your mouth continuously waters. Yup. Not super fun.

So, I guess that is my somewhat long update. It was a long but needed appointment. I will be going back to the doctors in 10-12 weeks, I am still waiting for the appointment desk to call me back. Slackers. Wishing everyone a good week, and that you all are staying warm in this cold spell! xo
I am hoping these “tweaks” will put me in the right direction!!! I am choosing to believe that positive things will happen. 😉

7 thoughts on “January Part 3 – The Long Awaited Appointment

  1. Good luck with this latest change – and i so get it on the sleep – added B6 and its helping some though.

    Amen on getting your records girlie. I pulled insurance records and went from there – tracked it back to a bite – WITH the EM in April 2007 (and again in August 2007) – not a word was mentioned to me about this damn disease. And i have had elevated lymphocytes since then (lymphocytosis – i.e., bacterial infection in blood)- and the stupid cardio (1st one) IGNORED the labs… okay rant over.

  2. OOPS – Point is – Kim makes an excellent point – if your doctor doesn’t want you researching – they probably aren’t the right doctor.

    mine loves the research I do – not happy cuz i am not in treatment but understands…so we wait….which prolongs the treatment period – anyway – get your records – they know i keep a copy of mine WITH me now. All of them.

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