This is topic Bones hurt in forum Medical Questions at LymeNet Flash.

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Posted by maryc (Member # 4904) on :
Hi I have been sick for over 25 years...... I finally found dr that treated me for many years. I have moved to Florida & feeling better. I spent 3 weeks in NY recently & came home feeling awful. My NY dr took me off of any meds & I have found a neurologist who is working with my pain. I am now on Lyrica & Cymbalta. And TRamadol for pain.

I am a little concerned with the overall pain/ exhaustion I have had since returning from NY. I have been home over a week and scared. Any ideas?
Posted by sammy (Member # 13952) on :
You did not mention the medications that were stopped recently by your new LLMD in NY?

The new pain medications prescribed by your neurologist will take at least 4 weeks to 2 months to have the full effect. You will start to notice positive changes after 2 weeks.

I'm sorry that your doctors did not explain what to expect with the medication changes. Or what to do if you continue to experience pain in the mean time.

You could probably give them a call to see if you could add some ibuprofen as needed to reduce pain & inflammation temporarily. As the other meds take effect, you may see your need of it go down.
Posted by TF (Member # 14183) on :
Tramadol works immediately for pain. Perhaps you are not taking enough of it. You will only be taking it until the other meds kick in.

Pain is exhausting, so once you get the pain level down, hopefully you will see an uptick in your energy.
Posted by maryc (Member # 4904) on :
Thank you TF & Sammy. I was on several different Antibiotics and Iv antibiotics for years!!! Last year my LLMD told me that the antibiotics weren't working, hence the Neurologist in Florida.

I sometimes feel as though I am reverting! Hope you are doing well.. Thanks again. Mary
Posted by dal123 (Member # 6313) on :
This isn't not enough information you are giving ! Why did your LLMD in Fla say the antibiotics are not working if you stated you were feeling better, etc. Something is not right here and I am suspicious the Dr who took you off of antibiotics isn't telling the truth, is he worried about the med boards taking his medical license. YOu need to find another LLMD ASAP and there are some good ones still taking patients.
Posted by TF (Member # 14183) on :
If you are still sick with lyme, you must continue treating it. Otherwise, you will go downhill.

Do they think that you are rid of lyme?

If so, what do they think is causing your pain? Do they think you are just depressed or what?
Posted by maryc (Member # 4904) on :
The LLMD Doctor that I have been going to in NY for over 10 years decided to stop my antibiotics last year. He stated that I had Post Lyme syndrome and the meds weren't working. When I came back to Florida the neurologist started studying Lyme and has given me Lyrica and Cymbalta for pain.
Posted by willbeatthis (Member # 31111) on :
Mary, I'm concerned for you. I don't like the sounds of this- Post Lyme Syndrome. I thought only ILADS believe in this. Sounds like you need to see a doc that wants to have you in remission- and until then, all the pain meds in the world will help pain while lyme continues to multiply and entrench in your body. Message me as I have a nurse practitioner contact that worked with Dr. H. I think at the very minimum you need a second opinion. TF knows of some Burrascano like docs too. I'm always concerned when I see all pain meds if your not lyme free. A urine lyme dot blot assay is what I would request (I'd do 3 samples). My bet if you have cyclical symptoms, your not in remission. Hang in there!
Posted by willbeatthis (Member # 31111) on :
Gosh knows, TF, or anyone- if LLMDS are stating PLS exists- please let me know!

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