I have received a couple of interesting emails lately regarding the connection between MM and autoimmune diseases, including Lyme Disease. One writer, Kate, has IGA Lambda MM with the t(4;14) translocation, as I have. While she says she does not have Lyme, she suffers from a variety of symptoms that her doctors say are autoimmune related. (I wonder if she might actually have a case of undiagnosed Lyme. Since the tests are so unreliable, there may be no way to know for sure.) Her oncologist acknowledges an association between autoimmune disorders and MM, but the MM experts don't know what the relationship is yet. She has also read that IGA MM patients have higher rates of both autoimmune diseases and t(4;14) translocations than other types. Interesting. This just adds more fuel to the fire about this type of connection, as far as I'm concerned.
Today I received a fascinating comment on one of my earlier posts about Lyme Disease. Dee has been treated for Lyme Disease several times, but she feels she had undiagnosed Lyme before that. She continues to have the usual range of symptoms indicating chronic Lyme. Fortunately, she is seeing a Lyme-literate doctor.
This year, she was diagnosed with an extremely rare disease: necrobiotic xanthogranuloma (NXG). Only about 125 cases a year are reported for this disease, and most of the literature is from Europe, primarily by those in the Lyme Disease community. However, NXG has been found to have a very high correlation with MM. She went to an oncologist and found she had elevated monoclonal protein. After a bone marrow biopsy (BMB), she was found to have Smoldering Myeloma (SM), and they also found Lyme bacteria Borrelia burgdorferi (Bb) spirochetes in her bone marrow! Wow!
This seems to establish a potential triad between Lyme Disease, NXG, and Multiple Myeloma. In fact, I found a paper establishing this 3-way link: http://www.medscape.com/viewarticle/721924_5. In a retrospective study, 80% of NXG patients showed monoclonal gammopathies. Furthermore, the paper states, "NXG biopsies suggested the presence of Borrelia spirochetes in six of seven samples, implicating spirochetes as a potential trigger for NXG".
Right now, my head hurts trying to assimilate all this information. While NXG is very rare, this reveals one probable pathway between Lyme Disease and myeloma, showing that the Lyme Bb instigates the NXG, which in turn instigates the monoclonal gammopathy. This implies cause and effect, not merely correlation. Bb is an extremely complicated and resourceful bacterium. It has many deleterious effects on the human body (as I myself have discovered), but I remain convinced that one of the more pernicious effects is that Lyme Disease is a potential trigger for monoclonal gammopathies, including MGUS, SM, and MM. I'm sure I will be blogging about this more as I gather more information on this topic.
Tomorrow I am headed up to the family farm in Champlain, NY for a relaxing weekend with my son, Jeff, and good friend, Bobby. Since we don't have good wireless connections there, I may miss a good blog talk radio show tomorrow night at 6:00 featuring Dr. Paul Richardson. Here is the link: http://www.blogtalkradio.com/dr-paul-richardson-discusses-myeloma. The topic is To Transplant or Not To Transplant: Thats the Question. Fellow blogger Pat Killingsworth is one of the panelists. I already know Paul's view on this, as we have discussed it at length. However, it is a hot topic of conversation these days in the MM community. Several clinical trials are underway to help answer this question (including the one I am on), so it will be interesting to see if there are any new developments on this topic. If I miss it, I hope someone will fill me in on it, or I can view it later.
bill, I look forward to more about the correlation between mm & lyme--as I sent you my details in your earlier post--I am convinced there is a correlation between tick borne diseases & mm! Have a great weekend!
ReplyDeletecarol in NC
thank you for keeping at this, i originally wrote you about my lyme and mgus, and since then I've joined the lyme awareness page on facebook, and asked if anyone is mgus positive to contact you through your blog, and let you know. I would also check out the mthfr mutation and connection to mm, also quite interesting because so many people with lyme have this mutatation, which makes it difficult to elimante toxins since the methylation cycle is not working properly.
ReplyDeleteHello, nice blog Bill, very informative. I too had Lyme, have MGUS and also 1 copy of MTHFR mutation. I had a very hard time with Lyme, dx Aug 2012 w multiple EM rashes and very high Lyme index. I was tx w abx for an entire yr and have been off them for 7 months now, but still don"t feel great.
ReplyDeleteMy ID doc here in Ma said that often MGNUS status does accompany Lyme and other TBI's. He has seen this status disappear as infections and inflammation disappear. So, until now he has been testing me and keeping an eye on my MGNUS. However this week he did have me tested for Bence Jones Protein and I'm waiting for those results.
I'm wondering if I do have this underlying condition if that is why my battle w Lyme was so tough. I also had RMSF and Typhus along w Lyme. Prior to last years bout, turns out I also had past infections of other strains that showed on my labs, and coincidently have been treated for CFS since 04.
I'm worried about my pending lab results as I am a 55 yr old post Lyme, menopausal single mom of a 13 yr old son with no energy.
I am very grateful that I have the best ID doc her in Ma just South of Boston. He is an excellent diagnostician and beloved doc to many and very informed and up to date on Lyme and coinfections....and takes insurance !
Thanks for your comments, Marie. It's encouraging to note that some doctors are starting to realize a connection between Lyme and monoclonal gammopathies. It sounds like you have had more than your share of medical problems. Good luck with your Bence Jones test, and I hope your MGUS stays under control.
DeleteMarie:
ReplyDeleteI would recommend that you get treated by an ILADS doctor. If you are still having symptoms, you still have L yme. My doc won't stop treatment until I have had at least 3 months with no symptoms. I take multiple abx to hit the three forms of the spirochete. I also treat babesia, bartonella and high virus titers. There are not many Id docs that know how to handle the difficult Lyme disease.
In my case, I took high-dose doxycycline for about 5 months. My Lyme symptoms abated after 4-6 weeks. I agree that you have to stay on the antibiotics for several months after the symptoms disappear. Fortunately, the treatment was successful and my symptoms haven't returned. Of course, I then contracted MM.
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