The biopsy results won't be back for another week or so, and I fervently hope that I haven't gotten any worse since my last biopsy in February. That would be kind of disappointing considering what I've been through since then. I fully expect that the flow cytometry results will show some minimum residual disease, since my recent immunofixation results keep showing a trace of Lambda monoclonal paraprotein in my blood. But that's OK. I've been told that this is normal and that transplant patients usually show various traces of monoclonal protein after the procedure. As long as the plasma level in my bone marrow is less than 5%, I will still be in Complete Response (CR).
My blood tests came back pretty good, although my WBC and neutrophils are still somewhat low from the consolidation therapy. As of now, I am on maintenance therapy consisting of 10 mg/day of Revlimid every day for the next three months. After that, they may increase my dose to 15 mg/day, depending on how I respond to the 10 mg dose. I don't have to go back again until Sept. 24, when I will get another blood draw and an infusion of Zometa. I should be on a monthly schedule of DFCI visits from now on, as long as I stay in remission.
In a previous post, I promised to revisit the issue of whether there is a potential link between Lyme Disease and Multiple Myeloma. Some of my anecdotal evidence from other patients (including my own experience) indicate some possible connection, but I wanted to find some hard data that might reveal whether there is a statistically significant correlation. My initial blog post on this subject was a bit fragmented and didn't include the best data sources. I did a Google search to see what other studies might have been done on this topic, but all I was able to find were some more anecdotal accounts of a possible link. So I guess the burden is on me to carry the torch here. By the way, since Lyme Disease is far more prevalent than MM, I assume that Lyme may possibly contribute to the pathogenesis (e.g., causal mechanism) of MM rather than vice versa.
I've now taken a little deeper look into this subject. Lyme Disease is a fairly recent phenomenon, with the number of cases increasing dramatically over the last fifteen years or so. If there is some correlation with MM, one would expect that those states or regions that have an unusually high incidence of Lyme Disease might start to show some increase in the incidence of MM over time. One good source I used is the CDC website that tracks Lyme Disease case and incidence data by state and year: http://www.cdc.gov/lyme/stats/index.html. Another good source is the CDC National Program of Cancer Registries (NPCR), which provides age-adjusted myloma statistics: http://apps.nccd.cdc.gov/uscs/cancersbystateandregion.aspx. In order to compare MM incidence from one region or state to another, it is necessary to age-adjust the raw incidence data to account for age discrepancies from one area to another. This is because MM primarily affects the older population. For the Lyme disease statistics, I could only assume that they were age-independent.
The good thing about the NPCR data is that they include the 95% confidence intervals for the state-by-state and regional MM data. I wanted to select a region with a large enough population to provide statistically significant results. It was therefore convenient for me to select the Northeast US region (New England and Mid Atlantic), consisting of the nine states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont, New Jersey, New York, and Pennsylvania. The NPCR data conveniently provides average age-adjusted MM incidence for this region and the total US, along with confidence intervals. I have summarized these data in the table below. I wasn't able to get exact correspondence for all of the years for comparison, but I don't think that makes a big difference.
It is interesting to note that this 9-state region has about 18% of the US population, but accounted for 75% of the Lyme Disease cases in 2008! The Lyme Disease incidence for this region was 39 cases/100K population, which is over 4 times the national average of 9.3 cases/100K. Looking at the MM incidence, the age adjusted incidence for this region for 2008 was 6.0 cases/100K, with a 95% confidence interval of 5.8 to 6.2. The US total age-adjusted MM incidence for the same year was 5.6 cases/100K, with a 95% confidence interval of 5.5 to 5.6. I consider these results to be conservative, since a more accurate comparison would be between the 9-state region and the remaining 51-state region, not the US as a whole. That would only increase the discrepancy from the numbers I am presenting here.
My interpretation of these results is that one can say with more than 95% confidence that there is a higher probability of contracting MM in this 9-state region which has a high incidence of Lyme Disease than in the US as a whole. To me, this seems to establish a statistically significant basis for concluding that Lyme Disease is a contributor to the pathogenesis of Multiple Myeloma. There, I've said it!
Now before any of you start sending my name into the Pulitzer or Nobel Prize nominating committees, just remember that figures don't lie, but liars can figure. I'm not sure that I have accounted for all possible variables that might influence these results. There may be other regional variations that I didn't consider that might possibly account for the observed variations. Someone researchers may have already looked at this and dismissed it for one reason or another. I'd be curious to know about any studies on this topic that I may have overlooked. I would also appreciate any comments or suggestions on my analysis approach, methodology, or any glaring errors that I may have made. Furthermore, I welcome any personal stories of MM patients who may also have a history of Lyme Disease.
| State | Population | Lyme cases | Lyme | MM cases | Age-adjusted | MM incidence | |||||
| (millions) | 2008 | Incidence | 2011 | MM incidence | 95% conf. | ||||||
| 2010 | (cases/100K) | (cases/100K) | interval | ||||||||
| 2008 | |||||||||||
| Connecticut | 3.6 | 2338 | 64.9 | 250 | 5.3 | ||||||
| Maine | 1.3 | 780 | 60.0 | 110 | 5.5 | ||||||
| Massachusetts | 6.6 | 3960 | 60.0 | 440 | 5.5 | ||||||
| New Hampshire | 1.3 | 1211 | 93.2 | 90 | 5.8 | ||||||
| Rhode Island | 1.1 | 186 | 16.9 | 70 | 4.9 | ||||||
| Vermont | 0.6 | 330 | 55.0 | 40 | 4.7 | ||||||
| New Jersey | 8.8 | 3214 | 36.5 | 660 | 6.1 | ||||||
| New York | 19.4 | 5741 | 29.6 | 1620 | 6.7 | ||||||
| Pennsylvania | 12.7 | 3818 | 30.1 | 990 | 5.5 | ||||||
| Regional Totals | 55.4 | 21578 | 38.9 | 4270 | 6.0 | 5.8-6.2 | |||||
| US Totals | 311.6 | 28921 | 9.3 | 20520 | 5.6 | 5.5-5.6 | |||||
| % of US totals | 17.8% | 74.6% | 20.8% | ||||||||
You have a wonderful blog! Thank you. I find this possible connection between lyme disease and MM fascinating. Do you need to factor in race, since MM disproportionately affects African-Americans?
ReplyDeleteIf my kappa light chains are elevated and I do currently have Lyme disease is there reason yo think I have myeloma
DeleteThanks for you comment. One of the problems with my analysis here is that establishing a correlation between Lyme and MM doesn't necessarily establish causality. As I reveal in subsequent posts, the correlation isn't as strong as I first thought, so I am now doubting that there is a causal relationship between Lyme Disease and MM. Your note that African-Americans are more affected my MM just adds to that doubt.
ReplyDeletePosting mid-October 2013
ReplyDeleteFirst, thanks Bill for your highly useful blog, which a friend turned me onto. Second, I've just met someone (female, white, elder) who had stage 3-4 MM and was given 9 months to live - 30 years ago. She's been in 'partial remission' under various continuing treatments ever since. She also had a short bout with acute Lyme (but I unaccountably forgot to ask her if that preceded the MM).
Now for mine. I think you're very much on the right track but it can be even more complicated than that. Hang with me here:
1. After getting the short-lived Lyme shot many years ago,, and possibly having undiagnosed Lyme anyway, I had the usual 1-month doxy for acute Lyme (acquired near Philly) in both 2006 and 2008.
2. I've had the usual range of symptoms since then, so I believe I have chronic Lyme. I now live in NY State.
3. Strange skin lesions began to pop up in 2011. Two shave biopsies were diagnosed as granuloma annulare (GA), not to worry about.
4. June 2013: New dermatologist and a much better practitioner muttered 'These don't look like GA to me'. Two shave biopsies later: Diagnosis necrobiotic xanthogranuloma (NXG) 'You must see a hematology-oncologist.' (It's possible that GA can progress to NXG)
5. Web search: NXG is so rare the CDC doesn't list it. Many papers and discussions on it, mostly from Europe - and mostly from the Lyme community. As of 2012 only 125 cases worldwide. Many if not most of these have Lyme (I suspect all of them do). NXG is also associated with MM.
6. Second dermatologist took two punch biopsies: NXG diagnosed again (followed by confirmation by Mayo). Using newly published microscope technique, Bb was detected in these biopsies.
7. NXG can also go into the organs; if goes to the heart, it can be quickly fatal.
8. Local hematologist/oncologist scheduled many many tests: all organs okay re both NXG and MM, but blood showed marker for pre-MM.
9. Bone marrow biopsy showed stage 1 MM ('smoldering'). The kicker - Bb may be in my marrow too but needs confirmation. Web search confirmed that Bb has been found in marrow.
9. Sent to MM guru at Dana Farber in Boston. He is working with a Dana dermatologist who has several patients with NXG - the first I've heard of in the US besides me. My first appt with Danaderm is in early Dec (2013), plus followup w/ MM guru, to return every few months. Apparently the MM-NXG-Bb triangle is real.
10. Another kicker: One new treatment can apparently suppress NXG and MM together, but it's extracted from a pool of tens of thousands of blood donors - therefore Lyme and its co-infections are in it. Therefore I can't take it. My holistic Lyme-literate doc says there are other reasons not to take it too but I don't know them yet.
11. Looking back at the former Q&A, I suspect that any demographic relationships with MM are probably moot when Lyme is a co-factor. By the way, the latest is that Lyme is all over the southeast too but not recognized as such, I think because it's not spread by the black-legged (Lyme) tick - in the south, it's in the lone star tick. More latest news - Lyme has been implicated in some skin malignancies (though I don't think NXG would be one of them, since the link to cancer is indirect). This is no longer trivial!
And finally, I just noticed that I jumped into your blog without seeing updated from 2013, which I'll look at now....
Wow! Your story blows me away. My head hurts just trying to sort all this out and make sense of it. The potential MM-NXG-Bb connection is a fascinating new twist, and I will definitely look into this. Thank you for your comments. I would appreciate you keeping me up to date with any new information you discover. By the way, I will be at Dana Farber on Dec. 2. If you happen to be there then, perhaps we could meet.
DeleteI would like to connect with you two in regards to this connection. I live in the Midwest, and three variations of Lyme disease has shown up on me on a sophisticated homeopathic scan. I did receive a custom homepathic medicine to remove this three versions, and have had some relief. However when I muscle test for truth,,, I see that I still have some Lyme in my system. and that Multiple Myeloma keeps "popping up" as if it is trying to be present in my body. As for testing for truth... I do concur with the NXG-MM-Bb triangle. I am finding that for MM to occur, there must be Lyme disease plus a miasm for MM (miasm is a suppressed inheritied tendancy). What is interesting about the three forms of Lyme disease found in me.... is that two of the three versions do not reside in the Midwest.... so how did I get these?
DeleteFrom one anonymous to another - I'd like to start a conversation with you also, off-blog. Turns out that my MM specialist, Paul Richardson of Dana Farber, is the same as Bill's and that we both have appts with him on Monday 12/2/13, so we'll meet in person. I'm unacquainted with blogs so will ask Bill how to connect with you.
ReplyDeleteI'm learning a lot more about Lyme as time goes on - for instance, it's now also implicated in several malignant skin conditions (NXG isn't cancerous by itself but I'm firmly convinced it's connected to the MM and suspect it's causal). Also, Lyme-associated skin lesions are found in South America. Also the lone star tick, known for Rocky Mtn spotted fever, is now known to transmit a variant of Lyme all over the southeast but isn't tracked or even generally recognized there yet. I'm very curious about your three variants... but as we now see, all bets are off with so much more info coming into focus. I'm also interested in what you mean by homeopathic scan... and by MM 'popping up' but not diagnosed. If you really want to find out, you should get a bone marrow biopsy - that's how I found mine. Enough for now, gotta continue preparing for Dana Farber visit....
Dear Anonymous, please email me at wfohalloran@gmail.com to connect with me and Dee. We are both meeting on Dec. 2 at the Farber, so I would like to connect with you directly somehow to arrange to meet with you as well.
DeleteHi - my father died a couple years ago (age 80), from MM on the death certificate, but I'm convinced he had undiagnosed lyme and that is what truly killed him. He also had postherpetic neuralgia from shingles for 6 years. This is my theory: first, my mom died in 2005...6 months later he was still in deep grief, got bit by a tick...had flu symptoms in May 2006, then a week later got shingles. Oct 2010 he broke ribs cleaning a carpet and diagnosed w/ late stage MM, 3 months to live w/o treatment. We did not use drugs...he lived 19 months. In his last 4 months, he had to be on levoquin constantly or he became almost comatose, the doctors never found the source of the bacteria, but his holistic doc prescribed the levoquin and agreed to renew it each time. he did go to ER once and they found no infection, but did mention a strange lesion in his brain. Of course they would not test for lyme...I should have done that through Igenex, but he was bedbound and very ill so could not travel. During that same 4 months he was so thin and weak that he fell 4 times...once in the bathroom...and did not break a bone (never did zometa either). So. I think he had lyme, which triggered the shingles (his nerve pain all those 6 years made him want to die) and also activated the MM...or as stated above maybe the Bb got in his marrow. Wish I could go back in time. One more piece to the puzzle, the MTHFR gene mutation C677T...it is associated w/ MM, and could be a reason the immune system is more vulnerable to lyme bacteria...I have it and I think he must have...it also makes it harder to detox by 50%. I recommend you ask for this blood test (methyltetrahydrofolatereductase - MTHFR). Peace and healing to you - there are many alternative treatments for lyme and MM to supplement whatever else you choose to do!
ReplyDeleteI have two copies of MThfr C677T and had no MGUS, marker for MM. Daughter has one copy and she did have MGUS. I think it may be from one of her intracellular pathogens. We all have lyme and I agree that your dad most likely had lyme. I am Dolores Claesson on facebook by the way.
DeleteI have been exploring the links between tick borne pathogens and certain cancers. My 15 year old daughter, deathly ill with lyme showed up with MGUS, a marker for MM. Rickettsias are one of three causes of Waldenstrom's Macroglobulinemia and many show up with other cancers as well. Reactivation of herpes viruses trigger certain cancers in the AIDS and lyme population and Lyme patients are immune compromised and we know some of the methods that these pathogens use to cripple the immune system. IgG sub classes are low in lyme patients and we do not build significant antibodies to 14 serotypes of strep pneumonia and are quite susceptible to pneumonias in general. Now I am seeing low CD 4 counts in lyme patients too. After treating we tested for MGUS again and it was not present.
ReplyDeleteThanks for your comments. You and some of the others who have commented on this post help to bolster the case for some connection between Lyme and MM. I am still continuing to pursue this potential link. I have some more recent blog posts addressing this issue.
DeleteI would be interested in any literature you come up with - since Lyme causes increase in plasma cells within the lymph nodes, that made me wonder whether there might be a connection with multiple myeloma.
ReplyDeleteMartha M Grout, MD, MD(H)
Scottsdale, AZ
I would be interested in any literature you come up with - since Lyme causes increase in plasma cells within the lymph nodes, that made me wonder whether there might be a connection with multiple myeloma.
ReplyDeleteMartha M Grout, MD, MD(H)
Scottsdale, AZ
Hello Martha
ReplyDeleteI have had LYME for 35yrs.
Recently diagnosed. 30/12/15
In the last few years I have been diognosed with MGUS and at about the same time peroni's disease .
I believe the MGUS & Peronie's disease are linked to my long term LYME.
How I can put it together as in prove it is my problem.
All 3 calcium related !! Go figure ....
Along with my Artherites
DeleteCommon Granuloma Annulare Herbal Remedies contain apple cider vinegar applied topically and taken orally, DMSO, tannic acid, milk of lysine and magnesia. Moreover, tea tree oil, vitamin E, and green tea also aid in recovery and serve as a medicine for granuloma annulare.
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ReplyDelete