I've beaten on this poor horse before, but I don't think it's dead yet. So I'm going to whack away some more.
I just got a comment from someone with MGUS (Monoclonal Gammopathy of Undetermined Significance) who responded to my previous June 10 post about Lyme Disease: More on Lyme. This person suffered from Lyme Disease in 2011, which went untreated for months, until the symptoms became significant. She (I think it is a she, but I'm not sure, since the post response was anonymous) finally got on some serious antibiotics, which brought the symptoms under control. But then in 2012, she was diagnosed with IgA MGUS.
This is a familiar story. It's my story, complete with the IgA diagnosis. She wonders if there is any connection between Lyme and MGUS/MM, particularly the IgA type. Hello! In her comment, she makes a rather serious accusation, and I quote, "one of the oncolog i saw said they know amongst themselves that lyme can trigger mgus but since lyme is so politicized and polarized they all keep their mouths shut while people suffer." Wow! I really hope this is not the case, but based on my past experience with the medical community on Lyme, it wouldn't surprise me at all.
As you know from reading my past blog posts, I have been fixated on the possible connection between Lyme Disease and myeloma for a long time. The commenter asked a pertinent question that I have been asking myself for a while: "I have wondered whether the assault on my immune triggered the IGA MGUS that I have or whether I had the iga mgus first and the lyme made it express itself when attacked." I have a gut feeling that contracting Lyme Disease suppresses the immune system to the point that any latent monoclonal gammopathy might be unleashed. My blog commenter theorizes that it might specifically trigger IgA-type gammopathy. I don't know. Maybe so.
I have a favor to ask of those reading my blog. If any of you have contracted MGUS, SMM or MM, I would appreciate it is you could respond either to my blog or directly to me by email (wfohalloran@gmail.com) whether you have ever previously had Lyme Disease or suffered from undiagnosed Lyme Disease type symptoms prior to your diagnosis. Please include your type of gammopathy (IgG, IgA, etc.). This is an informal survey, as I'm trying to determine if there is any discernible pattern that would connect Lyme to MGUS, SMM, or MM. Any anecdotal stories would be of interest. I would like to compile some information that might possibly shed some light on this issue.
Thank you in advance for your cooperation. I promise to keep any information you send me strictly confidential. What happens in Vegas stays in Vegas!
Four summers ago I was experiencing fatigue, fevers, and joint pain. My family was convinced I had Lyme disease. I was evaluated by my PCP and a rheumatologist and I was tested for Lyme among a million other things and the only significant finding was my m-spike and thus my initial dx of MGUS and now SMM. So, no positive lyme test for me but it sure seemed like I had it. I'm IgG lambda.
ReplyDeleteTake care,
Elizabeth
PS - I am the person who directed the anonymous commenter to your excellent blog :)
Hi Elizabeth,
DeleteI seem to recall that you had suffered Lyme-like symptoms before your MGUS diagnosis. Like you, it was followup testing from my Lyme experience that led to my MM diagnosis. Thanks for directing "Anonymous" to my blog. I hope to keep this line of inquiry going.
Bill
I do not have Lyme's, nor did my late brother who had IGG-Kappa myeloma as did our father who also passed away from myeloma. All 3 of us had Histoplasmosis, a disease from chicken manure, which we raised on the family farm. No apparent effects in any of us other than the connection?? to myeloma..... Dr. B in Little Rock had not mentioned a causal relationship.
ReplyDeleteHope this helps.
Keith
Hi Keith,
DeleteI'm beginning to think there may be a connection between various infectious diseases and the onset of MGUS/SMM/MM. Maybe it has something to do with suppression of the immune system which creates an environment for MM to develop. I plan to do more research on this.
Diagnosed with Lyme in 2007, 10 years after a tick bite. Diagnosed in March 2013 with MGUS, IgG Kappa.
ReplyDeleteThanks for your input. I plan to follow up with more blog posts on this topic.
Deletelyme went undiagnosed for 9 months..had fevers, nausea, and balance issues..treated with 3 months of antibiotics ..6 years later IGA Kappa..
ReplyDeleteWow! Sounds like my story. Mine is IgA Kappa as well. I hope you are doing well. Thanks for your post
DeleteAs a realtor, I walk property quite a bit. In 2001 a bad tick bite which resulted in rash and swollen feet with blisters under skin, went to primary care, they said it was not Lyme here in NC and no treatment. Starting then a spiral of medical events which first started with really crazy symptoms resulting in hyperthyroidism/Graves and having thyroid ablation with radioactive iodine. Then many years of joint pain, fatigue & high inflammation rate--Rheumatologists did all the tests but did not come up with anything specific, so diagnosed as unspecific autoimmune. Also during these years had at least one other bad tick bite. In 2009 they did an SPEP a bit elevated, followed by another next year still elevated so referred to disease specialist doc with did a different panel of tests which indicated MM and referred to oncologist. MM confirmed by oncologist (IGA Lambda) I had no CRAB symptoms (but had felt awful on & off for years) so they thought MGUS but when BMB was done almost 70% plasma cells--due to this, it was suggested I begin treatment immediately. Even though never diagnosed by our routine blood test done for Lym, (had a coworker who had negative blood test but went to Lyme specialist and had band test done & confirmed Lyme), I am convinced (and have told docs) that I had Lyme (or some other tickborne disease which resulted in MM. Thanks for your work on this. Carol in North Carolina
ReplyDeleteCarol, I'm sorry to hear of your unfortunate medical history. Thank you for sending me your story, which is not unlike my own, as well as that of others who have responded to my previous posts. I will continue to pursue this. Hopefully, at some point, someone in the medical community will start taking this stuff seriously, get their heads out of the sand, and do some real research to find some answers. Regards, Bill
ReplyDeleteI don't know of research (or anecdotal info)specifically linking LD to MGUS. But there is significant research published (and patents applied for on the info) proving that Bb's OspA (outer surface protein)triggers an immunosuppression making one unable to fight fungal pathogens. It also activates latent viruses, such as EBV, hepatitis and others. A synthetic version of OspA has been developed and is being patented for use as a nasal spray to suppress the imm sys during a flu pandemic. This is because during such pandemics, more people die from secondary infections (fungal) and the huge inflammatory reactions of the body trying to fight the flu and any 2ndary infections.
ReplyDeleteHere is one article about the synthetic OspA, which is called "synthetic lipoprotein Pam3Cys". When you bring up this article, look on the right panel for the studies that reference this one. Read the REVIEW of toll-like receptors if you can wade thru the biosci! This is the basic path by which OspA causes imm suppression etc - thru the toll-like receptors. http://www.ncbi.nlm.nih.gov/pubmed/12496438
Thank you for your suggestions. I read the abstract of the article you referenced, which involved murine studies, so I'm not sure of the impact on humans at this point. The article was quite technical, so I would have to research some of the related articles, as you suggested, to draw some inferences on the immunosuppressive effects on humans and how it might relate to increased susceptibility to MM.
ReplyDeleteMy husband who is now 67 suffers from chronic neurological Lyme. During his career as a wetland scientist he spent over 40 years working in Lyme endemic areas including Wisconsin and Massachusetts as well as teaching courses in coastal wetlands from Rhode Island to Nova Scotia. He was first diagnosed and treated after a very positive Western blot in 1999 but has had many reoccurences over the years. During a month long hospital stay for evaluation his blood work showed up an IgG lambda gammopathy. After 2 follow ups with a hematologist in the oncology group they decided it no longer required future follow ups. He also has a history of agranulocytosis and thrombocytopenia. I should add that the various physicians we dealt with were extremely dismissive of the idea of chronic or persistent Lyme.
ReplyDeleteI'm sorry to hear about your husband's suffering. It's a tragedy that the medical community is still so dismissive about the debilitating effects of chronic Lyme Disease. Hopefully, that may change in the future with enough input from the patient community. Fortunately, it seems as if your husband's monoclonal gammopathy is under control for now, but I would continue to have it monitored. I'm convinced that Lyme and other autoimmune disorders increases the chance of contracting Multiple Myeloma, as the suppressed immune system allows it to flourish out of control. Good luck!
DeleteJust found this blog so hope you are still working it. I am a 59yr old female. Diagnosed in 1994 with MM, too many details to go into, but finally told it was really MGUS, actually CTC said a polyclonal gammopathy. IGG & IGM high. Then in 2005 diagnosed with Lyme, positive Western Blot, year of antibiotics that did no good of course. Now am in the midst of tests again, Dr thinks I could have MS, Lupus, or MM. I know there is a link between all this junk and hoping they figure it out soon. Don't want to be told a second time I only have 5yrs to live. Will keep watching your updates.
ReplyDeleteI'm sorry about your various medical problems with MM and Lyme Disease. While I'm convinced that there is a link between Lyme and MM, I haven't been able to determine what that link is. One possibility is that Lyme Disease compromises the immune system so that any latent MM cells may be encouraged to proliferate into full MM. Just a thought. Some people with chronic Lyme have to get massive amounts of antibiotics through a port in order to get some relief
ReplyDeletehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3236117/ link
ReplyDeleteDear Anonymous, Thanks for the link to this excellent article. I came across this a couple of years ago, and it is the only published article that I have come across that links Lyme Disease with MM. It's interesting to note that there are also a number of other immunological conditions that seem to cause a predisposition to MM. Thanks for sharing the article.
ReplyDeleteHi Bill,
ReplyDeleteI’m curious if you’ve found more information on this correlation?
Also more specifically, I would like to know if those who have had Lyme disease and multiple myeloma at the same time found that their test result numbers (for example Igg) were higher or skewed due to the Lyme disease? I have someone in my family who was diagnosed with multiple myeloma and recently diagnosed with Lyme disease and his numbers have spiked since he came back from our home (in a wooded area where there are many ticks). Trying to gather some information as knowledge is power and sometimes doctors don’t fully explain results or side effects of medications and how both diseases affect each other. Or could the multiple myeloma be stronger now because the Luke disease has weakened his immune system?
I appreciate any personal experience with this or knowledgeable explanations.
I had Lyme's Disease from Finland and had to take antibiotics for 6 months because if not working in the USA. The doctor waited to give it to me, not sure because it was borderline. After two weeks was full blown in 2001. Started to have healh issues in mid 2000s until 2018, the doctors were having trouble figuring bout the reasons a long with adverse reactions to medications and multiple allergies to medications began, now was diagnosed with SMM fie the first time. Did not know I must have been MGUS during this time.
ReplyDeleteLate in 2018, I began losing sensation in my feet. A blood test in early 2019 came back positive for Lyme disease. I was treated for Lyme, but the neuropathy has continued to slowly spread. A blood test ordered by my neurologist shows an M-Spike, and I am to see a Hematologist for further testing. After finding this information, I will certainly be asking about correlation between my M-Spike results and Lyme.
ReplyDeleteThe blood test results which are sending me to a hematologist are as follows:
DeleteM-Spike: 0.6 HIGH
The SPE pattern demonstrates a single peak (M-spike) in the beta
region which may represent monoclonal protein.
Immunofixation Result, Serum
Immunofixation shows IgG monoclonal protein with kappa light chain specificity.
I don’t know if you are still taking updates, but here is mine for the record.
ReplyDeleteI received a tick bite when I was just 26 in 1967, and between then and now there have been episodes of fever, neuropathy, arrhythmia, and digestive upsets. However, I was not diagnosed with Lyme until 2011. Natural treatments for Lyme effectively suppressed the infection.
In 2019, I was diagnosed with smoldering myeloma (M-spike is around 1, with IgG lambda). My brother was diagnosed with Waldenstrom macroglobulinemia in the same timeframe. My myeloma is accompanied by lack of IgM, IgE, IgA and three subclasses of IgG. IgG overall is normal. This condition is known as hypogammaglobulinemia, which I have had since the early 1990’s.
I have also had melanoma on the face, corrected by surgery, and prostate cancer with two months of radiation. These are doing well.
Doctors at MD Anderson listen politely, but I think they are not Lyme literate, or remember to incorporate such history into their treatments. My Lyme responds well to natural medicines, so I try to fill in where commercial medicine does not.
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