Lyme Arthiritis

Dear Friends

I am writing this on my wife's behalf. She has been tested +tve for Lyme arthritis by a rheumatologist. This started in late November 2014 when she started feeling pain in her knee and some swelling. Thinking it is normal injury, we went to orthopedic. He did an X-ray and told he everything is fine with the bones, there is lot of fluid in the knee and she needs to see a rheumatolgosit for potential lymes disease test.

The same day we went to the rheumatologist, and he drained fluid from her knee which was Yellowish in color. He said it is not a good sign. The test results on her blood and fluid came after a week. Here is what results showed:

1) IgG WB - All results negative for all types
2) IgM WB - +tve for P41 & P23
3) Lyme PCR - Negative



Base on the IgM he said you have Lymes and we started antibiotics. He gave us Amoxycyllin for one month and that did not help. He also gave Naproxene and told my wife to take on need basis. We saw no improvement.

After a month we showed him again and he said to go for IV antibiotics but we told him we want to try another month with oral antibiotics and this we went with DOXYCyclin along with Naproxene. Meanwhile we also scheduled an appointment at John Hopkins (Infectious Disease Center).

After taking Doxy & Naproxene ( Twice a day) for one month the swelling and fluid has reduce a lot but pain is still there.

On our appointment with John Hopkins doctor, we showed the results from the Rheumatologist and the JohnHopkins doctor said I don't think you have Lymes. She ran another set of tests (Lyme Antibody Screen W/RFL to WB) and the results came negative. So the doctor confirmed there is no Lymes. She told us to get Steroid shot in knee and agreed that there was some kind of infection which they dont know what it was and can't check now since the fluid is almost gone, the Steroid shot will take care of the swelling and pain.

We went back to our Rheumatologist to get the procedure done. He said no and told us John Hopkins is wrong and we need to do IV antibiotics and if that doesn't fix it then go to R.A medication for a year.

We are all confused and don't know what to do. My wife's active lifestyle is disrupted because of this. She is seeing physiotherapist which is helping in management of her pain and knee motion. We really want to know whats wrong with her.

Hoping for a some guidance.


Thanks

Hi bjsingh!
Welcome to our community!! I'm so glad you found us.

"She told us to get Steroid shot in knee and agreed that there was some kind of infection..."

Oh my word!! I seriously don't know why some doctors have a license!! Doctors are to never give steroids if there is a suspicion of an infection because steroids lower the immune system allowing the infections to spread further.

I'm so very sorry that your wife was treated so poorly. Did your wife actually get the steroid shot?

Kudos to your Rheumy that caught this!!! But unless he is properly trained, he won't be able to help your wife heal.

Your wife needs to quit seeing doc's that really know very little to nothing about these infections. They are very complex and do not "act" like "regular infections.

The type of doctor your wife needs to see is an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor). Lyme arthritis is a stage 3 (chronic infection) symptom. She will need specialized care in order to recover and not have continuing symptoms.

If you haven't yet, please do read through our "New to Lyme? Start here!" thread as it's packed with important and helpful information, such as symptom lists (as Lyme rarely is the only infection passed), detoxing suggestions, and even information on probiotics to take while she is on abx (antibiotics).

For information on finding an ILADS trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

​You can send me an email by clicking on my screen name or the small blue envelop under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can also email the Tick-Borne Disease Alliance at [email protected] for LLMD referrals and you can go to tbdalliance.org/ to learn more about these infections.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74
​

As I said, you will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf


The tests that are available for these infections are very, very poor. Did you notice that you were told that it's an antibody test? Well, these infections inhibit the immune system from producing antibodies, and that has a lot to do with the poor quality. The Western Blot only catches about 50% of those that are infected and the ELISA (which is almost certainly what the JohnsHopkins doc ran) only catches about 30% of those that have these infections. So it's no wonder that your wife's case was missed by that test! It misses at least 70% of the cases of Lyme!!

There are other reasons for a person to not test positive as well - but considering that your wife had a positive on the serum from her knee - especially P23, which is Lyme specific - none of that matters. Without proper treatment, this won't go away.