Can someone tell me if I'm at the right place or not. Does this sound like lyme? I will try to be brief...

I was dx'd 10 years ago with RA. A few weeks ago my naturapath suggested being tested for Lyme - through Bowen Research it came back positive. I then had PCR testing of blood, urine and breastmilk - all negative. I'm in Montana and I'm having a VERY VERY hard time finding anyone who knows about lyme. So now I'm wondering - do I Have lyme instead of RA - or both. I really need to know because this greatly affects my treatment.

Here's a run-down:

I've had a postive ANA (80 and again at 160) (this test has also come out negative too)

I have tested postive for RA factor (160) (this test has also come out negative)

My sed rate is always pretty low - 10 - 15 and my whit blood cell count has always been in normal range.
C-reactive protein - negative.

My symptoms:
Definite arthritis in my hands and wrists - lots of swelling and no strength.

Arthritis sometimes moves to my knees, elbows and feet, but always in my hands.

Sometimes whole body hurts - sore muscles everywhere.

Very poor memory and concentration.

Persistant rash on my hip (doesn't look like the EM).

Gastro troubles.

Bad neck creaks and stiffness. Sometimes a very weird pressure in neck and ears.

Arthritis went away when I was pregnant - Would this happen with lyme?

I was on prednisone for a short time, but it made me worse! Very bad leg soreness.

I do remember getting a very bad flu around the time all this started, but no rash.

I've been on Doxy for a week - no herx. The only thing I noticed is a lymph node under my arm is swollen.

Doctor gave me goldenseal/echinacea - made me feel worse, which sounds to me like an autoimmune thing, but maybe it's a herx(?).

That's pretty much it. Sorry, I could not be brief - I feel bad even writing it because some of you have so many more horrible symptoms.

Does this sound familiar to anyone??

Please help, I just need to know if I am on the right road. I'm very depressed about this - too many questions and no answers.

My naturopath has never dealt with lyme before - she's great, but I'm nervous, because she doesn't have a lot of experience with lyme (she wants to give my a lyme nosode - which from what I read is for dogs and cats - good for them, but maybe not me!)

Thank you so very much for your help.

Ellen

When my LD worsens, I always get arthritis in my hands and feet.

The rest of your symptoms are certainly in line with Lyme. Coinfections are just as important, too -- babesia, erlichia, and bartonella seem to be the major ones, and if they are not treated they can be just as destructive as LD, with similar symptoms. So -- definitely worth pursuing the Lyme/TBD trail.

PCR tests are tremendously specific because they look for actual pieces of the bug in the blood. Like looking for a needle in a haystack, and it is not at all unusual for PCRs to be negative in infected people.

If you come up with a positive, it's a lovely piece of confirmation, but many people never test positive and it should not be the main criteria for treatment.

If at all possible, do go see a Lyme literate MD (LLMD). If, like me, you're a great distance from your LLMD, you can find a local MD to work with the LLMD. Many of us have to travel for treatment, but it's worth it.

In addition, there are many people on the board who use NDs; you could probably get your ND to consult with one of the NDs more familiar with Lyme and TBDs. You could post a message with this request in the subject line.

Check out the Links for New Members at http://flash.lymenet.org/ubb/Forum1/HTML/009342.html and you'll find out resources for finding a LLMD, and links to information about coinfections, the list of LD symptoms, information about blood work, and so on.

As an aside, many people now treating RA consider pathogens to be the basis for the disease. You can also check out The Road Back site at http://roadback.org for their approach.

But if you think it's at all possible you've been exposed to a tick-borne disease, (and ticks are NOT the only vector!) please please make sure you treat it thoroughly.

All the best. So sorry you have to deal with this, but the Internet is a fantabulous tool for finding ways to get well.

I'm editing to add links about LD in Montana; there are more if you search this forum using Montana.
http://flash.lymenet.org/ubb/Forum1/HTML/024577.html
http://flash.lymenet.org/ubb/Forum1/HTML/024577.html

Ha! And you thought your post was long!

[This message has been edited by minoucat (edited 26 June 2004).]
 

In fact the study just about rulled out "autoimmune" as a possibility. It is more likely an allergic reaction to an infection. You can treat the allergic reaction by destroying the immune system (and eventually killing the patient) or you can treat the infection (and eventually save the patient).