I have been going to my LLMD since Sept of last year and been on Biaxin/plaquinil combo since; with a break in March for IV; then back on Oral. IV did nothing! My docs think I have had LD for over three years before I was diagnosed.

I saw my GP a week ago and she referred me to a pain management specialist. I went to see my LLMD on Thursday and she said not to go see him. She thinks taht there is nothing he can do for me and that NO pain meds will help the pain I am experiencing. She also refuses to perscribe any pain meds so I get them from my GP as well as bp meds, and antidepressants. I only take Ultracet when I really need it otherwise I take Advil or Tylenol Arthritis.
Also the pain guy is LL from what I understand and has read my extensive file.

I am so frustrated with this constant pain in my knees and hips I can sometimes bearly walk much less get through the day with my 5 and 3 year old boys. I am interested to know if anyone has been to a pain specialist and what were the results?

My GP now has seen from my positive test results that I have LD but was a non believer until my LLMD ran more tests that showed positive IGG and IGM antibodies just this past March.
My LLMD also has said that the nerve damage to my knees and hips may keep me from running the distances I was running before I got sick(I was running five miles four days a week). She has referred me to a LLMD/Infectious Disease Doc at Tufts University in Boston, whom I will be seeing in two weeks.

I was taking neproxin and advil but my doc said nope dont do it leaky gut.

So my gp gave me one bottle of same thing your doc had. But said i needed to see a pain management doc .
Now my lyme doc in his paper work encourages us to not take pain med as it covers up the sever herxes which does not want us to have. I am now only taking the pain med in very serious times. However with you having to chase babys goodness.

I am able to lay down so it helps with the pain. If i ride its much worse.
I wonder what these docs do?
Interested in seeing if anyone else has gone.

Wonder if your lldr is concerned the other doc will report her treatment of you. I think a lot of our docs are nervous when we tell other docs who they may know are against long term meds. This may have nothing to do with it but who knows.

Why would your LLMD not support seeing a pain doctor? Is this why you are changing LLMD's or are you just going for a second opinion?

When I told him about the Lyme, he thought that it made perfect sense: explained my wide variety of pain problems.

Anyway, what is important is that he believes the patient. And he keeps trying until he finds something that will give the patient some relief.

Adding here to say that at my first visit with an LLMD, he said that I was welcomed to use any of my pain meds to help with pain from herxing as I would probably need it.

Note: I was never on any steroids for pain. The LLMD also said to stay away from steroids, but that Toradol injections were okay on occasion.

Pack a few things and go sit on the LLMD's door step, with all your kids, till they do something about the pain. It is the 21st century. Pain management has come a long way. Doctors are suppose to help... not stand in the way of relief.

Sometimes I wanna grab their stupid little prescription pads out of their stupid little hands and smack them on top of the head with it.

The law won't allow patients to help themselves when it comes to one of the most basic needs... their health. But they think it is ok to put doctors in charge of pain relief 100 percent... doctors who think everyone should tuff it out and keep quiet.

Puppy poo!

WHAT THE HECK ARE WE PAYING THEM FOR?

We can't go to a car wash for pain management help... we need help from THEM. They have the control.. and to not use it to help patients...

SUCKS!

Choice two:

Go to the pain specialist and see what they have to offer.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

WARNING:

You said..

"She has referred me to a LLMD/Infectious Disease Doc at Tufts University in Boston, whom I will be seeing in two weeks."

Not that I know everything.. but that sounds like a double negative to me.

An Infectious Disease doctor first... and at Tufts?

I don't think so.

Lyddie was right... best not count on that being any help. I would seriously question your LLMD... if SHE is really a LLMD... and see why she is doing that. You have the right to know.

I would check out the name of the ID first.. with folks here.

Something smells fishy.

Also.. if you have history of pain meds addiction.. or alcohol use.. this may be the reason she is holding back. Not saying you do, of course.. just trying to figure out why they would not want to help you manage the pain.

I hope you find relief soon.

If she continues to say no to pain management... ask why. If it isn't a DARN good reason... go to another LLMD... ASAP!

BUT NOT THE ID DUCK AT TUFTS.

Find your own LLMD from a source here.

GOOD LUCK!

Did you get a referral from a "happy customer", patient? Or did you just happen upon a doctor who says that they know how to treat Lyme?

If an LLMD is sending you to Tufts as a referral, then I, personally, do not think that you are seeing a real LLMD.

Just my opinion and experience of reading thousands and thousands of post over several years. Tufts...bad...for treatment of LD and their co-infections.

Here let me right it: She still has lyme. She still needs treatment. She is in pain. Lyme causes pain. We need not another opinion to provie this. Prescribe her something.

I see a pain management specialist seperate from my LLMD. I was seeing him before the Lyme diagnose, and I decided to stay with him.

As Lyddie said, a good pain management specialist will help you control your pain. I like my LLMD, but her specialty is in getting rid of an infection, not managing pain. I think it's fine for an LLMD to send you to somebody to manage the pain.

Be aware that there are some bad pain management specialists, as with all docs. I'd be suspicious if you only received narcotics or if the doc didn't believe your pain is real.

My daughter was in severe pain, and would not have made it through without pain management. She was on oxycontin for a while, and has finally weaned off that now that the lyme is in more control. She is still in pain, but she is functional.

The important thing is that you must stay active to really beat this lyme I believe (thats how your body will rid itself from the toxins produced). If your in a ton of pain, you will be like ole tincup there...herxing and hiding under the covers... Which for a day or two isnt bad, but for the long term is not helpful!

We found the pain management to be helpful when it included the following:
1) Pain pills
2) Physical therapy (not the no pain no gain,...but gentle joint movement, stretching and heat which does not produce more pain)

Now, if the pain management includes steroidal treatment or implanted pain pumps, I would be cautious, as these things can reduce the function of your own immune system which would make the lyme embed deeper. This may be your doctors concern.