lyme and longterm steriods

Were you bit after your RA diagnosis? Or is there a chance they just confused your Lyme for RA? I think long term immunosuppressants are pretty dangerous for any sort of illness as most if not all autoimmune diseases are triggered by pathogens. You could consider some immune modulators like reishi/chaga/etc. I'm not the one to ask but I know someone who got near full remission from RA with chaga and it would probably help rather than hurt the Lyme prognosis. Whatever you can do to ween off those meds and on to something more productive is ideal but of course that can be a process to figure out what works for you

I was getting steroid injections in my knees prior to being bit by the tick carrying lyme disease. I have osteoarthritis of the knees and have had it since I was very young. Which, in my case, means I have grown up with knee pain. Having grown up with it, I have learned to manage better than those that get it when they are older. And my pain tolerance is so different than most my age, says my doctor.

When I got bit by the lyme carrying tick, my knees began to hurt, along with many other symptoms and what I did was go to the orthopedist and have them drain and shoot up my knee with steroids.

Those steroids just really got those lyme bugs all riled up and they made an even bigger pain in my knees. I then found out I had lyme and did not do the steroids again.

Now I am in remission and I have had 2 sets of steroid shots in my knees 3 months apart. I have had no lyme symptoms come back because of those shots. And I certainly hope this continues so I can do the minimal walking and standing without pain.

Just wanted you to hear my story on steroid use. Just remember we are all different.

I would not encourage you to see an ID doc - they rarely understand (or admit) that Lyme cause issues like yours, or needs the treatment that it really does. Here are some articles pointing out the differences:

ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373


www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/


We can be of help to you in finding an ILADS ​(International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor) in your area, 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 envelope 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 start a new thread titled something like "Looking for LLMD in the ​​
(insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.

You can also email the Tick-Borne Disease Alliance at
​[​​url]​[email protected]​ for LLMD referrals

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​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


​ ​
And www.LymeDoc.org

You will want to find an ILADS 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 healing journey: www.ilads.org/lyme/treatment-guideline.php


As for your test results, here is the site that I use to help interpret them:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease. It only takes ONE IND or positive band to indicate a Lyme infection that needs treatment.


Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Also, just penicilin will not do the trick. Definitely do your homework on this. I know it's overwhelming but you will quickly find there is much controversy with Lyme Disease.