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 Post subject: Virtual LLMD appointment
PostPosted: Thu Feb 21, 2008 2:31 pm 
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Joined: Tue Feb 19, 2008 8:15 am
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Location: Arkansas
I had my periodic phone conference with Dr. C. yesterday. My main topic was the terrible levels of pain Laine is suffering right now and that I can do NOTHING to help. I fax her daily journal, that I keep for her, to him before we talk and he reads it so there is no "So how's she doing" we just get right to it. Dr. C says managing her pain is his number one priority and that there is no way she can fight anything if she is so stressed by the pain. He says it is time to move to more heavy duty stuff and he fedex'd a Rx while we were talking (he's in a different state so he can't call in certain meds across state lines). She is going to Long Action Morphine, whatever that is. He says he has no concerns about addictions with Laine and we will do the withdrawel protocols when she no longer needs it. IF it works and IF she tolerates it. I asked what does 'if she tolerates it' mean. He said if it gives her any sensation of being high, if it makes her sick, if it makes her sleepy, if it doesn't work, then she is not tolerating it and we move on to another one. He says there are four families of drugs we can work through. They all sound scary and I have a lot of research to do. She is taking 1800mg of Neurontin a day now and he said to not stop that. All her recent blood work came back normal. She is just starting Biaxin and it is making her very nauseous. Probably because I am breaking them into thirds (I bit one trying to make it smaller and GOOD HEAVENS it was just terribly bitter! Yuck!) She finally finished a thirty day supply of Amoxicillin after two and a half months. Anybody have any experience with narcotic pain killers? When the pain is managing we will continue our quest to find the perfect abx that will make her bettr. No luck so far.


 Post subject: Re: Virtual LLMD appointment
PostPosted: Thu Feb 21, 2008 7:14 pm 
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Hi Susan,
Sorry Laine is in so much pain, it is awful, I know.

Yes I have done narcotic pain meds w/treatment, I have a link on it here that you may find of interest, click here: viewtopic.php?f=6&t=23

I have found not many medications give much relief for very long. Disease pain is so different from say, injury pain, so my belief is that is the reason narcotic pain meds don't help much. Xanax has been a miracle drug for me, I will take it when nerve pain is high or even pain is high and out of everything I have tried from Oxycontin to Neurontin, it works fast and helps the absolute best, although it can be short lived, it is still a break.

My pain management MD told me to 'stay ahead of the pain' and 'not to chase it'. In other words, take the medicine whether I am having a high pain day or not. I endlessly chase the pain though.

I can't stress this enough. Laine with such high pain issues (sounds so much like me) needs viral testing. Viral co-infections are common and can make severity of symptoms very bad. Here is a link about viral co-infections: viewtopic.php?f=6&t=55

Is the Neurontin helping at all? If not, ask for Lyrica and see if that helps better. Lyrica is the newer, better version of Neurontin.

Please tell her I am thinking of her and that she is not alone in her pain.


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 Post subject: Re: Virtual LLMD appointment
PostPosted: Fri Feb 22, 2008 6:07 am 
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SUsan, it sounds like you have a fabulous LLMD. When our bodies are in pain, they CAN NOT heal. He is so right. I can totally understand Laine's pain, I live it every day. Pain managment where I live is a joke, and it's why I'm so bad now, because they all want to shove cortisone in you , which we all know makes us worse. I'm lucky to get what I get, it slightly takes the edge off and lets me get thru my day,and do the mother tasks I need to do with two toddlers. Morphine is one of the best choices, it's the most pure (natural). The pain in SOME lyme patients really is aweful. Not all of them have pain like this, I know Dana and I live every day in agony. There have been so many studies done about addiction, and people who are actually in pain RARELY ever get addicted, if you take the medication as prescribed, as you are supposed to, very low low low risk. I think Laine will be so grateful she wakes up and is able to walk down stairs without cringing. I will pray for her that this helps her. I'm sure her doctor is starting her on the lowest dose possible he thinks will work for her, he sounds very thourough (sp?), it's not like this was his first line of defense.

"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.

Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.

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