I remember tat lady well but she has since left the forum and being treated for Lyme. It may be useful to look back on the old post and find what she has written. Best wishes. Autumm

Hi, flyerlover, and welcome to this forum of nice people. A few different doctors over the past several years have checked me for Lyme's, but blood work has always been negative. It's quite possible that Lyme's can trigger DM/PM, but there are probably several other conditions than can trigger it as well. I've read articles regarding Epstein-Barr Virus and Parvovirus 19 being triggers, both of which I have/had. Also, myositis can be lupus-induced, statin-induced, etc. There are probably many triggers for PM/DM. And for some of us, there might be 2 or more triggers. Hope you find the answers you need. But if you have DM, stick around. Best wishes.

Hi flyerlover, Respectfully, DM is NOT a result of having Lyme. That is why Lyme is called Lyme with a separate name. Lyme might be an overlapping component for some patients but not all of us.

It is important that when you read articles on this disease, that you look up the meanings of the different words and talk to the doctor about the articles that you read. Some patients may have overlapping Lyme AND DM, just like some may have a Myasthenia Gravis component and DM. Not all of us have a Lyme overlapping component.

DM/PM can have many different causes and not all of us have Lyme. I do not have Lyme. I am in my fourth year with DM. I have talked with many patients over the years and no two of us are totally alike. If you find out your autoantibodies then you can read up on the specific ingredients of that autoantibody. Learn the progression of the autoantibody and what to expect as disease progresses.

There is much to learn. Welcome to the group!

Hi Autumn - Thank you - I did search the site and read a few posts - just wasn't sure if it was her or not. But I did find some helpful info!

Nanny1611 - Yes I read those articles as well. Yes, it seems there are certainly more than one trigger. As my Docs say - each of us carries around a certain set of circumstances and when you add one 'trigger' to you - it may do nothing, and then you can add that same "trigger' to me - and poof!!

Hi trpt1 - Respectfully - I do not believe that you can say that MY DM (assuming I have it) is NOT a result of Lyme. One can never know - science is learning and evolving and changing everyday; and they certainly haven't figured it out yet.

I have been reading, some nights it's all I seem to do... and there are 13 case studies of DM and Lyme and that the DM resolved after extensive treatment for the Lyme bacteria. Nothing medical science has taken on to say it is a definitive cause with just those few cases - but it happens - ,and for some, it can set off a chain reaction. Lots of science out there saying AI diseases are very much driven by 'triggers'. Maybe this was MY trigger?

My primary and my Derm both believe that Lyme "started a fire" (i.e. 'trigger') within me. Although they believe that since I rec'd Lyme treatment, "that fire is now out - it caused many other fires to burn and continuing to treat Lyme will not put those fires out". That makes sense to me - but again - I'd love to pursue the idea further.
If treating both the DM and the LYme were not contraindicated - I wouldn't mind - but steroids are THE worst thing for Lyme. So I'm trying to get to the bottom of it all before any treatment. And of course, I a still awaiting a firm diagnosis. Doc wanted a muscle biopsy, but Derm said it might be beneficial and less invasive to do a MRI to look for damage to the muscles first - which seems reasonable to me.

I certainly never said that everyone on this site's DM was caused by Lyme! I just think mine was. I have no science behind my opinion - other that I was doing perfectly fine until I got Lyme. But then again, that bodes well for what my Doc's theory is; the whole fire starting. And yes, overlapping may be the reason - just seems awfully coincidental to me.

ANA testing has been done; and ironically - it has completely changed after my first course of AP - which my primary predicted. Again, another indication (to me) that Lyme is driving this ship. ANA's should not change. The numbers may fluctuate, but not the pattern.

I'm awaiting an appt with a LLD (Lyme literate Doc) and a DM specialist whom I assume will order more bloodwork. Just a long wait in between as most Rhuem's and Docs in general take a wait and see approach during the initial diagnosis as the symptoms take time to fully evolve. So frustrating. Seems to me the whole process is reactive vs. proactive.

No one has yet tested for Anti Jo and the others. At the time my symptoms mimicked Scleroderma (SD) (which might I add mimick DM minus the Morphea) and many of my tests were ordered by that Rheumy specialist. When I see him next, now with the rash and weakness, he will likely order a whole new series of specific ANA's.

I'm just an interesting bundle. I am terribly hopeful that this is 100% Lyme and it is just mimicking DM. I hope to find out soon!

Thank you all for taking the time to respond!
My best!

Hi Flyover. It would be great if it's the Lyme looking like DM but you are right, I remember the Steriods made the Canadian Lady so much worse so you are in good hands with your doctors who seem both clever and sensible. I too had a clever and sensible Rheumatologist. It does make all the difference. I did not have a muscle biopsy as he sent me for MRI and the inflammation was seen in the muscles of my lower legs, he ran Myositis associated and Myositis specific auto antibody lab work. I had Anti Jo which is Myositus specific so together with the MRI and other lab work the diagnosis was made. Do let us know how you progress. Best wishes. Autumm

Hi flyerlover, Here is a website that will be helpful for answering many questions: www.Sclero.Org

I hope you get a clear diagnosis and find the best medications.

Best Wishes.

Autumn - Tks for your reply. It's good to know the biopsy is not a definitive requirement; at least in your experience. I like the idea of NOT having to cut me up!

trpt1 - Tks, I've been on that site... actually started there when it was acting like SD and my ANA's fit that bill - then.

For me, this seems to be an evolving situation so... time and test will tell. I'll keep you posted!