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Wednesday, October 15, 2014

More on Lyme

I just got a recent email from a woman who titled her email "Lyme m spike".  She had found a elevated m spike in her urine and wanted to talk to me.  She said she has not felt well for many years.  Does that sound familiar to those of you in the chronic Lyme community?  Anyway, she hasn't talked to me yet, probably out of fear.  She emailed me to say she was afraid to call me because she wasn't sure if she had MM and didn't want me to scare her any further.  I wrote back to her that she might have a precursor condition, and she should find out her status as soon as possible.  Sadly, I have not heard back from her.  Many people, faced with a possible bad diagnosis, put their heads in the sand and refuse to deal with it.  I hope to hear from her and I hope she follows up on  her initial test results.

This email has triggered me to go back to revisit my long-felt connection between Lyme disease and MM.  I belong to the Multiple Myeloma Research Foundation (MMRF,) which has enrolled a large number of MM patients to find some correlation between MM and prior medical problems.  I have listed my profile with them.  However, the list of medical problems identified in the list they provided for general medical conditions is pretty much useless.  Under their category of General Health, they offer only 13 options.  Of these, only 3 have had any positive response from MM sufferers:  high blood pressure (31%), osteoporosis (15%), and diabetes (7%).  Everything else was zero!  41% of the respondents listed "Other".  I think the MMRF has missed the boat with this.

Let's just talk about the "Other".  There is a lot of indication that autoimmune disease may be correlated with MM, as I have blogged about earlier.  Today I emailed MMRF to expand their general health categories to include Lyme disease, along with some other autoimmune disorders, such as Lupis, etc.  Furthermore, I would like the MMRF to fund some studies to investigate these links.  I plan to follow up with this and hope to get more information that can be shared among the MM community looking for common links.

At the very least, I would like to see some protocols put in place to do early screening of blood protein levels for those patients presenting with Lyme disease or other autoimmune diseases.  Early diagnosis would provide tremendous long-term benefits to those who have MM.  I was lucky to have a PCP who noticed my elevated protein levels early and referred me to a hematologist before it got out of hand.  Too many MM patients present with advanced symptoms, such as broken bones or kidney problems, when early screening would have helped to give early treatment and a better prognosis.

I'll let your know how the MMRF responds to my suggestions.

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