Appointment recaps: Pain management and LLMD

I may have to use the sentence structure of a five-year-old for this. Severe brain fog has kept me from typing my updates. But I may be able to get it done if I just try another way of speaking. I have a few sentences typed up from last week to go on…

Two weeks ago I set two new blog records. I feel special! :) Probably the most amazing thing about this is that my words reach people all over the world. Had you told me as a child, One day you will grow up and share your words, and people everywhere, in dozens of countries, will read them and be helped by them, I would have called you crazy. Technology can be so amazing, when used in a way that is beneficial.

I had my usual beginning-of-the-month flare, but I was able to get through it a lot better because I have adequate pain management… Or suffering-management, I should say. So much coughing, coughing, coughing. But my appointment with the pain management specialist went very well and I have what I need to cope. I no longer have to ration out meds and I think I’ve come to terms with being a chronic pain patient for the time being. As long as I stick to the schedule and not try to see how long I can last without them, I am okay.

I am able to stretch daily again, which is amazing and a big help. With continued exercise I should keep my muscle tone and gain more muscle stamina, which is really important because goodness knows what I face ahead of me.

I had my LLMD appointment but we didn’t have much time to speak because he is busy and overbooked. But I’ll take a twenty-minute appointment in comparison to no appointment. We really didn’t have time to go over much, but I have been given instructions to attempt Amoxicillin; do a round of Diflucan to make sure yeast isn’t a problem; and see a chiropractor in the event that it may help my headaches. I’ll make another appointment in January.

Right now I am taking Diflucan, one pill a day, which I can handle as long as I am properly medicated. And taking my probiotics to rebuild my poor GI tract while I’m off antibiotics. Beginning “next year” I shall attempt treatment again… Everyone is hopeful that,  just like being properly medicated is allowing me to take the Diflucan, that perhaps having adequate pain management will allow me to withstand Lyme disease treatment. I am hopeful, too… Patients undergoing cancer treatment get help with their intense pain and discomfort; why shouldn’t I?

I won’t be treating all forms of Lyme. Ideally I’d be on Amoxil PLUS Biaxin PLUS Flagyl and treat ALL the forms so it would DIE AND STAY DEAD… But if we did that I, too, would die and stay dead, LOL. And Amoxil doesn’t treat Mycoplasma pneumoniae at all. But, if it’s all I can handle…? If I even can…! But who knows, maybe that is what I need right now, to ONLY kill some of the Lyme. Just like in the past when my body couldn’t deal with killing Bartonella and Mycoplasma PLUS Lyme, maybe now my body cannot handle killing Lyme PLUS Myco. Maybe now, I have to get the Lyme count down before I can deal with the Mycoplasma… Who knows!

On the plus side, that paper that explained how well various antibiotics attack Lyme, said “amoxicillin reduced spirochetal forms by ~85% – 90% and [cyst] forms by ~68%”–so that is good!

I’m just trying to go with the flow and enjoy my life in whatever form it is available to me. If you’re reading this, have a blessed holiday season and treasure your loved ones. :)

a rainbow at night

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4 thoughts on “Appointment recaps: Pain management and LLMD

  1. Good luck for the new regime! I’ve had issues with various drugs and supplements and I’ve finally found a set that I can tolerate – amoxicillin and tinidazole. Have you tried tinidazole? I’d say it’s one more ‘difficult’ than amoxicillin to tolerate, but of course it varies in person to person.

    The weird thing is that I tolerated IV ceftriaxone fine, and that’s meant to be a Big Daddy of drugs.

    Anyway. I wish you well! I’m just writing – or thinking about writing a blog post about how lucky I am for pain not to be the main feature of my illness.

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    1. Thanks for your comment, Decima. I’ve always felt really amazing on Amoxil–even when I had Lyme but didn’t know it yet, it made me feel better without herxing! So I’m hopeful I can get that again. I am so glad you are able to tolerate that combination! I heard recently that they think Amoxil can reach the CNS even better than once thought, but I don’t have the source… If you happen to see it, let me know! :)

      We tried several times to get my insurance to approve tinidazole for me, but they wouldn’t, so I’ve been on its cousin Flagyl, instead. Practically the same drug, but less effective and more toxic. Eventually I would hope to be on that, in addition to the Amoxil, which would be about the same thing you’re on, except my doctor also wants me on Biaxin to kill ALL the forms. We shall see!

      You should write it! For my next post, I plan to write about what my pain is actually like, because many Lymies mention severe pain but I have no idea what they’re talking about. Joint pain? Nerve pain? Facial pain? Headaches? What? My main problem is these incapacitating, progressive headaches (makes sense for someone with primary neuroborreliosis) and the overall SICK that makes me feel like I’m dying. Hence calling it “suffering” management!

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      1. I can’t tolerate metronidazole at all (I think it’s flagyl). Nasty stuff! I’m also on artesunate, which my medical place makes themselves, it’s a form of artisimin (sp?) which is meant to be good for the cysts, or parasite like things like babesia. One of those, or both. I get mixed up! As I have babesia symptoms, I’m all for it!

        Pain is weird, I think everyone gets different types of pain in different places. I’ve never ment any lymies that have the *exact* same presentation as me. It effects everyone differently. I do get the odd debilitating severe headache though, usually at the monthly flare points. And then I get a milder one every 3 to 4 days. I’ve been tracking all my symptoms for nearly 2 months now on a spreadsheet and it’s really interesting to make graphs and see any patterns. There are patterns I didn’t expect and where I did expect patterns there have been none, very odd.

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        1. Aha, that’s pretty much my pattern, too. Debiliating headaches about at the monthly flare points, the worst of which is around the beginning of the month. I’m sorry you have them, but if they have to be there, it’s good that you noticed their significance! My symptoms flare mid-month as well, which is probably why right now I’m having a trigeminal neuralgia flare up. (The every two weeks is the mycoplasma.) When I had bartonella I used to get them every 5-6 days like clockwork. Babs is supposed to give them pretty reliably every 4 days.

          Many people have so many strains and infections, finding a pattern is impossible, but for those who can, like us, it can help guide treatment. :)

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