chronic pain post lyme patient

[entarage]

hello, i am a 43 year old woman who is in remission of chronic lyme disease, however my pain is getting worse the past year.  i was diagnosed w/ lyme in Feb. 2001, did many courses of abx and even did intravenous abx daily for 9 months back in 2002.  Since then i have been up and down with symptoms of pain and have been in pain management.  I had a year or so that I was stabalized, but the past year has been getting worse for me.  

The pain consists of hand numbness upon waking, a stiff , extremely painful spine which can not bend upon waking, neck, back, arm, torso and leg burning pain.  
My current pain management doctor is not very helpful, keeps his visits w/ me about 7 minutes long, and does not offer any other options other than to give me the pain medication (oxycontin, 40 mg, twice daily).  I go to him because he is the only doc nearby who takes my health insurance.  I don't have many options and I am unable to function w/o the medication.  

My lyme doc has stated that i am in remission of the lyme and that the pain must be coming from my thalamus area, the mid-brain, but he says the inflammation would be too microscopic to see on an MRI of the brain, which i just had(normal).  The main problem is that now i have no diagnosis.  I went to see another neurologist, the one who gave me the MRI of my brain, along w/ some other tests, and ruled out Lupus, MS and rheumatoid arthritis.  He said that whatever is wrong w/ me is "out of his realm of knowledge".  

Some people bring up fibromyalgia as a possiblility, but I never really believed that as a diagnosis.  What is the cause? That is my question? If i only knew what was causing this.  My blood work doesn't show anything weird, yet I can barely get out of bed in the morning.
Does anyone have any similar experience?

Thanks for reading this.
Tara

[JackieCalifornia]

PS, you can also post a NEW message on this site.  This thread that you posted on is pretty old and they sometimes don't get read thoroughly.

Go to the top of this page, and you will see an orange colored box that says

                                          POST A QUESTION

Put in your question there, with a title like:

                            Need LLMD on Long Island NY

And then put a message like the one you put on this message thread.  That way it will catch people's eye.

[JackieCalifornia]

Welcome to MedHelp.

To find a Lyme specialists who takes a thorough approach to diagnosis and treatment, you could send an email to:

                     contact [at] ILADS [dot] org

Tell them where you are located and how far you can travel.
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Also look online at

                     Columbia-Lyme [dot] org

That's at Columbia University in Manhattan.  I don't know if they are pure research and don't have any facility to treat or refer patients, but it's an idea and will get you into the loop for finding an LLMD (patient slang for a Lyme Literate MD, meaning one who 'gets' the concept of Lyme as the misery that it is.
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Don't give up!  Let us know if you need more information, tho I don't think we have anyone posting here currently who lives on Long Island.

I went through 20+ docs before I was diagnosed and treated, and I'm fine now.  It took finding an LLMD to make it happen.

Best wishes -- and Don't Give Up!   Keep us posted --

[Juttin3]

Living on long island and having lyme is worst. Doctors dont treat it and dont know about it. One of the most tick infested areas. Unbelievable these doctors. Ive been to 8 now and no treatment for 3 years.

[JackieCalifornia]

Have you consulted a Lyme specialist for an evaluation of your situation?  If you think your symptoms could be Lyme, then that's what I would do.

[Christine49]

I was diagnosed with lyme in Oct. 2010 ,treated with months of antibiotics but continued to get worse with incredible pain that persists, I"ve also had trouble swallowing severe neck pain, severe throat pain severe headaches, numbness, many many missed periods, brain fog, sound sensitivities, crying spells muscles twitching, weird crazy rashes, all kinds neuro issues, its been a nightmare, been to all kinds of docs, I"m scared to grow old like this , I feel like death many days. But it is systemic and can affect any body part, it also moves around and causes severe pain!  

[Ricobord]

My LLMD has a chapter in a well known book on Lyme treatments, and he says that he typically treats patients for 9 months to four years.  If you've had multiple courses, then the Lyme spirochetes have had a chance to multiply again every time you have stopped antibiotics.  And 9 months of IV is a bit on the short end. It sounds like you have been undertreated for years and are still suffering from a persistent infection.  

I suggest finding a new doctor.  LLMDs have learned a lot in the last 10 years.  Good luck!