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NO cortisone shots for pain of Lyme Disease
4 Replies
January - March 25

Hi everyone. I just was reading up on Lyme Disease - a serious infectious disease that is frequently NOT diagnosed.

I wanted to pass this along: I just read that if you have Lyme Disease you should NOT get cortisone injections to help with pain in your joints. The pain is due to an infection, and cortisone decreases your body's ability to fight infection. You can google for more information and discussion about this if interested.

Many people diagnosed with rheumatoid arthritis or fibromyalgia are really suffering from later stages of Lyme Disease. Getting the right diagnosis is difficult, as testing is somewhat unreliable; two tests should be run, the ELISA and the Western blot. Even with both tests, there is only about a 95% chance of correct diagnosis. Labs can be sloppy about keeping samples at the right temperature and doing testing properly, so you might want to request several tests if you have had a tick bite and a rash.

I read tonight that some doctors are trying to avoid treating Lyme patients (!!!) because the diagnosis is tricky and there are controversies about the treatment. Some think a short course of antibiotics will fix it; others argue that long term antibiotic use is necessary (18-24 months of IV antibiotics). Long term use of antibiotics is risky. There are some people who go through treatment, but are never cured of Lyme Disease. So be aware that if you have this disease, you might have trouble finding a doctor!

I wanted to post this information because have had so many doctors offer me cortisone injections for pain in my back and my joints. (No thanks!) Not a single one ever asked me about Lyme Disease or tested me for it. In fact, I live in an area with a lot of Lyme Disease; I have been bitten by a couple ticks; I did have big round red rash once; and my doctor ran only one test which came back negative. This was many years ago, and I figured I was okay. Now I am starting to wonder...


Jocelyn - March 25


With all your pain, you need to be tested with the best test known to find Lyme Disease, especially if you have had a rash! Good Luck, you certainly don't need anything else.


January - March 27

Hi jocelyn - thanks for your response. It's something I think about - but I was on enough antibiotics last decade to kill a horse -- and almost myself.

Here's my dilemma - I want to avoid antibiotics as much as possible in the future. If I tested positive for Lyme now, I would be in a later stage of it - and that would mean extended antibiotic treatment, with no guarantee of success - and further damage to my system. The alternative method is to work on my immune system and stay as strong as I can.

As for my pain level, I'm doing pretty well with the regimen I have worked out, which includes diet, supplements and a very few low-dose old drugs. The main problem is that I tire out. Wish I had the stamina to exercise more - but now that the weather is warm, I'm trying to walk.


Jocelyn - March 27

Hi January,

I see what you mean. You are in a difficult situation and there is no right or wrong way. I hope you are able to exercise now that the warm weather is arriving. Let me know how you feel. My brother's girlfrien was just diagnosed with Lyme disease, she has been passing out and has other health related problems, so she is seeking medical attention at the moment. I don't know her status as of yet, but I will be talking to her. She is going to Mass General in Boston MA. I'll see what they say and let you know if there is anything new out there.

Hang in there and keep me posted!


January - March 27

Hi Jocelyn, last week has been pretty OK. I think the nice weather and good air pressure helps!

I am so sorry to hear about your brother's girlfriend and the Lyme diagnosis. I would love to hear about the treatment protocols they offer her, and I hope they've caught it quickly.

Hope things are well with you!



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