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03/05/2008 23:52
accalea
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Well, I don't know if it helps but we have all been through this, it seems to almost be an innitiation into our club. Well, the issue with the tests that you meantioned is that even if the spinal tap shows that the lyme is in your spinal fluid,the treatment is not going to be any different. So basically all you get is the right to say that it is in your spinal fluid and a very painful test. I would allow the brain scan just to see what is says. I have been on a whole bunch of pain meds. You may mention trying the Fentanyl patch because it is easier on the stomach and much stronger. He should also keep you on the percocet for what they call breakthrough pain. As far as the pain meds and the doctor, you need to be blunt with him and tell him you are in this much pain and it is his job to help you with that and that you hate feeling like a drug addict just to be freeof pain. If he tries to tell you that the pain is all in your head, explain to him that whether the pain is fake or you have a broken ankle the pain registers in your brain the same, so he needs to help it. If this doesn't work, find a new doctor.

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03/06/2008 10:06
jaime1978
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great advice accalea!
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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03/13/2008 13:44
kenn2761
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Well I went to the Neurologist Yesterday and a Pain Management Doctor today...

First the Neurologist seemed interest in my case, and he said this is not uncommon. What has happened is the nerve in my lower back is inflamed, causing pain down my leg. Over time this will trace back to the place of origin, and cause pain there too... Which is my upper back, neck and head. Seems like he knows what he is talking about. I have a nerve test scheduled with him in approx one month

Today i went to the Pain management doctor. He wasnt too helpful. He said that i dont have many options and the only option he had for me was to get a cortizone shot in my S5 nerve (thats my lower back)... He said he has given them to lyme patients and never had a problem. But from what I have read in the previous comments above and other forums online is that no one has ever seen a Cortizone shot to be helpful. From what i have read on other websites is that the Cortizone is really only useful in your joints, like your knee. I think its kinda funny because I have been to a doctor in Hartford, that said he will not give me that shot, because either i wont benefit from it or it can make my pain worse. Now this doctor is saying the opposite. There seems to be only opinions with lyme disease and not really too many facts. like what works and what doesnt.

Also im going to start physical theropy on monday... The massage chair is still a work in progress.

Ken

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03/13/2008 17:33
Clayton72
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I wouldn't do it!!! Yep, lots of opinions and not many facts - you can thank our lovely CDC for that. As long as they don't let the truth out about this disease, the doctors are going to remain uneducated.

Good luck - sorry you are having such a hard time, Ken!

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03/14/2008 05:39
jaime1978
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Ken, the doc who WOULDN"T do the shot seems to know what he's talking about moreso than the guy you just went to ... I hate pain managment docs, they are injection happy!Ultimately it's your choice, but you couldn't pay me 10 billion dollars to put that in my body again. Seroiusly, I know it's an outrageous number, but you couldn't. And I know MANY other lymies who said the same thing. If you pm me where you are at, I can try to help you find a doctor who is lyme friendly.
Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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03/14/2008 05:54
ConnieD
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Well, I don't mean to sound like a Debbie-downer, but I had physical therapy for almost a year. It did not help me at all. In fact, I left with a headache every time. Why did I keep going? Back then, I trusted that the doctors and PTs knew what they were doing. An MRI showed that I had some herniated discs, so PT will help. However, over 70% of the population have herniated discs with no symptoms at all. My pain and inflammation were from the undetected Lyme and coinfections and not from spinal abnormalities. Once I was finally properly treated for chronic lyme, the inflammation goes down and VOILA, pain disappears.

Good luck with PT. I hope it helps you. At least for you, you have us to share our stories and experiences in a kind and honest environment.

I used to want one of those massage chairs, too. I always thought, "I think it would feel good if I got run over by a car and just smoosh the pain out." I don't think that anymore. I'm free.

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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