A Lyme Disease Journal

Help Pass Federal Legislation

I know our collective political attention is focused on the presidential election at the moment, but the day to day acts of government and citizenship also deserve our attention. The Lyme community is mobilizing once again to try to pass legislation, which is very much needed. Please help. In the past, it has successfully passed legislation that helps to address needs such as education, informing patients that there is more than one standard of care, and asking insurance companies to pay for long term antibiotics. A summary (last updated in 2014) can be found on lymedisease.org, which gives a sense of how long this has been a focus of the community:

Every year since 1998, advocates have tried to pass federal bills to create a balanced advisory committee and a federal program to address the growing epidemic. None of the bills even made it out of committee until 2014.

The time has come again to move this effort forward — by attaching an amendment to a major piece of health care that the Senate is voting on. You can help by calling or emailing your senator and asking them to co-sponsor the Lyme and Tick-Borne Disease Prevention, Education and Research Act (S. 1503) with Sen. Blumenthal (the link has all the information you need and a way to send an email).


My experience with Mold in the home

If you have Lyme disease then you’ve probably asked the question at some point whether or not mold in your home is contributing to your health problems.  It’s an extremely difficult question to answer.  Early on in my illness, and before being diagnosed with Lyme, I blamed all of my problems on mold, mostly because water damage to my house occurred right around the same time my health started to decline.

First of all, mold certainly could be an issue.  Mold can cause immune suppression, inflammation, and neurological systems, just like Lyme.  Toxic mold can create a toxic burden on your body, just like Lyme.  So it certainly could be a factor and may be another piece to the puzzle of regaining your health.  So you do need to ask the question.

At my house, water from ice dams ran inside for several days before I stopped it by shoveling the snow off of my roof.  Any materials like drywall, insulation and carpeting that stays wet for more than 24 hours can grow mold, so I did have a potential problem.

Next, there are theories about certain people being genetically susceptible to mold illness.  I will save my thoughts on those theories for another day.  For now, if you have Lyme, then you have a compromised immune system; and mold, if it’s in your home, is just one more insult on your system that you don’t need.

The first step to answering the question would be to look for obvious signs of mold in your home.  Can you actually see mold growing in your basement or attic?  Do you see water stains coming from roof leaks, basement leaks, or plumbing leaks?  Can you smell mold or musty odors?  If you do, then it’s easy to say you have a mold problem.  A professional mold remediator will probably be necessary to solve these kinds of problems.  If you are in the Pittsburgh area and email our group at info@pghlyme.org I would be happy to give you recommendations for local mold remediators.  If you have a small amount of visible mold you could use Concrobium which is a very low-odor product and great at killing mold and eliminating musty odors (and easily available at places like Home Depot and Amazon).

But what if you don’t see these signs, are you in the clear?  I was heavily fixated on mold problems in my house in places I could not see.  I worried about what was happening inside my exterior walls where I had water intrusion from ice dams and inside the walls of my finished basement.  To be clear, these were valid concerns.  I had many mold tests done and the results were mixed: some indicated a problem; some were normal.  I punched many holes in many different walls and sawed into floor boards looking for mold, but never really found anything moldy.  I was having great difficulty answering the question, did I or did I not have a mold problem.

If you are still having difficulty determining if you have a mold issue, you can have a mold remediator do a walk-through of your house, looking for problems, doing some spot testing with a moisture meter and performing swab mold tests.  Depending on the results of the visual test and spot tests, more extensive mold testing could be done.  Again, if you are in the Pittsburgh area, I have dealt with many of the local companies please contact our group at info@pghlyme.org for recommendations.  Another possibility, if you are able to leave your house for a week or more, do so to see if you feel much better away from your house. This could be a valuable clue.  If the weather is nice you could also considering camping in your backyard as long as it’s not tick infested.

But, it took me years to figure out I was missing the forest for the trees.  I did not have a hidden mold problem, at least not a significant one.  Nor did I have obvious mold growing somewhere in my house.  I was missing the importance of simple cleaning.   The best example of this: we moved to a house (trying to escape our mold problems) with an unfinished basement.  I purposely looked for a house with an unfinished basement so I could keep an eye on any water intrusions.  The basement certainly looked dry and mold free but unfortunately air sampling mold testing showed the basement tested somewhat high for aspergillus (506 spores/m3).  I brought in a mold remeditator to check out my basement for a recommendation to lower the mold levels who simply laughed and said “on a scale of 1 to 10, this basement is a 0 for mold” because there was no visible mold.  So why were the levels that high?

I spoke to another mold remediator, who suggested a simple cleaning was in order, using the hepa sandwich.  That is, hepa vacuum every surface in the basement, wipe every surface with an antimicrobial cleaner, and then hepa vacuum again.  After I did this, a repeat mold test showed 0 mold spores.  And my body, which due to my mold sensitivities is the best mold test ever, agreed; that basement was clean and healthy.  Lesson learned, mold can thrive in simple house dust, even if you don’t see it.  Now, I am adamant about regular house cleaning, and that includes not only the main living areas but the basement and garage as well.  I dust and hepa vacuum all the floors regularly, and use Clorox wipes on most surfaces.

I’ve mentioned mold testing a lot.  Like everything else, it’s difficult to answer how accurate it is.  I had air sampling done by several different local restoration companies and home inspectors; I had air sampling done by a machine that I rented and was sent to me, I performed the testing and sent the machine back; and I performed ERMI testing from Mycometrics, which is a test you perform yourself–you use a vacuum cleaner or swiffer to collect dust and send the dust for analysis.  Air sampling can be inaccurate because the mold can be settled in dust.  For that reason, I think ERMI makes more sense, plus it does a better job at identifying the type of mold.

Once you’ve dealt with obvious and hidden mold problems, and made sure your house is clean, another good idea is to run hepa air filters.  I own many, and believe in running at least one on every level of the home.  On the low-end, I have a Honeywell True Hepa filter, I use it in the basement.  I have a middle-of-the-road Austin Air Healthmate for my bedroom, and a high-end IQ Air HealthPro for our main living area, which sits in between our kitchen, dining room and living room.  The Honeywell is just a hepa filter, meaning it filters particulates including mold.  But the the Austin Air and IQ Air also have activated carbon for eliminating chemical odors.

So do take mold seriously.  Investigate mold in your home to the best of your ability.  Don’t underestimate the importance of cleaning your house.  And please contact us if you have questions at info@pghlyme.org.  Good luck.

New Goals for the Blog

If you’ve visited me recently at gotlyme.wordpress.com you may have noticed that we have a bit of a new look (and that we can now also be found at pghlyme.org). This blog was slowing down, and I made the decision to help revitalize it by joining its effort with that of the Pittsburgh Lyme Support Group, something I hope will be mutually beneficial.

The PghLyme Support group is trying to get a strong support network off the ground in Pittsburgh, and we’ve made this blog it’s front page. As part of that effort, we’ve also added a new author, Pittsburgh Lyme Support Group founder Bill Moore. He is listed on the contact page, and has written about his Lyme Story. Bill also founded the pghlyme facebook group, and I am very excited to have him collaborate on this blog. I hope you will enjoy his contributions as well.



Lyme Research Progresses

As a scientist with Lyme disease, the early years of my illness were distinguished by a frustrating lack of information in the published literature. I had to really dig to find relevant literature, and what literature there was seemed minimalistic, narrow, and or contradictory with either my own experience or other articles. The doctors most skilled at treating Lyme disease were (for the most part) not researchers, and the researchers were (for the most part) not listening to the patients or those doctors.

Skip forward a decade, and boy have things changed. While many of the researchers I mention were doing their research even in 2006, the body of work has grown in a satisfying and very extensive fashion. In addition, several Lyme specific funding agencies exist including the Bay Area Lyme Disease Foundation, the Lyme Disease Association, Lymedisease.org, and the Lyme Research Alliance, and the Dr. Paul Duray Research Fellowship Endowment, Inc. Not only are these agencies helping to fund critical research, but they are beginning to find ways to encourage new people to study Lyme disease. For example, Stanford Medical School has formed theLyme disease working group to study Lyme disease thanks to the work of the Stand4Lyme foundation

I want to highlight some of the people whose work is worth watching:

Dr. Eva Sapi, associate professor at the University of New Haven, was a biologist and cancer researcher who contracted Lyme disease in 2002. She eventually abandoned her cancer research to study Lyme disease. She has published about different strains of Borrelia’s in-vitro response to antibiotics (basic research that will eventually help to guide treatment); studied the role of Borrelia in Morgellon’s disease, studied the formation of biofilms by Borrelia, and most recently developed improved methods for cultivating Borrelia (again, critical basic research that will help with testing and proof that Borrelia was not just present in the past, which antibodies show, but is currently living in the body). She has also helped with first steps toward exploring whether or not Borrelia can be transmitted sexually (a question this blog also considers) by showing that Borrelia can be present in vaginal fluids and semen along with Ralph Stricker.

Dr. Raphael Stricker is an Internal Medicine specialist in private practice. His research experience originated in the 1980s, when he was an HIV researcher associated with the University of California School of Medicine. After a lengthy break, he started doing Lyme research in 2002, and has over 60 published articles on Lyme disease, co-infections, and Morgellons. Some of his articles are highly specific, dealing with topics such as musical hallucinations and optic neuritis. Others tackle critical issues such as the use of long-term antibiotics. Still others help to address the lyme wars head on, including his work on guidelines, the patient-reported impacts of Lyme disease on quality of life, gender bias in lyme disease, and sexual transmission.

Lorraine Johnson, J.D., M.B.A. is the executive director of the Lyme Disease Association (LDA), a lawyer, a blogger on Lyme policy, and an advocate for all of us. She regularly conducts surveys through LDA’s network of patients, along with the broader network of people on the state-by-state Lyme mailing lists. This group of patients represents primarily those with chronic Lyme disease. She often collaborates with Dr. Stricker and I have been lucky enough to co-author with her as well. Some of her works includes a review article on Chronic Lyme and an article on the severity of symptoms compared to other chronic diseases and a meta-analysis of cases demonstrating persistent infection post treatment.

Dr. Brian Fallon is a professor of Psychiatry in the Columbia University College of Physicians & Surgeons, where he directs the Lyme and Tick-Borne Diseases Research Center, which I believe is one of the the first if not the first center associated with a major medical research university to explore issues relating to persistent symptoms and longer-term treatments (including a meta-analysis of 4 published studies which became famous during the recent case between the connecticut attorney general and the IDSA about their guidelines), including psychiatric manifestations of lyme, changes in the brain associated with persistent lyme symptoms. He is on the advisory board of the Lyme Disease Association, and his bio there nicely sums up more recent work of the center, not all of which I could find publications for, on topics such as identifying a more sensitive Lyme Western blot, identifying unique proteins associated with  Lyme encephalopathy (but not chronic fatigue syndrome or healthy controls), post-mortem studies of patients with chronic Lyme symptoms and identifying of biomarkers to help guide treatment recommendations.


Dr. Monica Embers (faculty at the Tulane National Primate Research Center, and one of several researchers funded by the Bay Area Lyme Disease Foundation), along with Dr. Barthold and others studied persistent infection using monkeys. This allowed them to study persistence in ways that are not possible in human patients. Lorraine Johnston summarizes the implications for treatment and explores why this study was published 12 years after a parallel study by Wormser (of humans) in her policy blog. Dr. Embers also studies a variety of other topics including how Borrelia evades the immune system, the impact of slow growth rates of Borrelia on its persistence in the presence of antibiotics and the history, pros and cons of vaccination strategies.

Dr. Alan MacDonald runs the Dr. Paul Durray Research Fellowship Endowment. He has worked on issues such as long term persistence, but some of his most unique and impactful work focuses on the impact of Borrelia on the brain, including work on Alzheimer’s disease and the possibility that associated plaques are actually caused by Borrelia; Dementia and the presence of spirochetesMS and its relationship to Lyme disease; and Borrelia biofilms.

I am certain that this is an incomplete list, and for example it does not touch on the set of people who have been instrumental in writing treatment guidelines, nor does it highlight most of the research on Lyme in animals who can get it (e.g., dogs), studies of how Lyme spreads in the ecosystem, and so on. That said, I encourage you to keep an eye on the work of these outstanding researchers. We are lucky to have them, and their work spans the gamut from test-tube studies to surveys of patients to field studies of treatments.


Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)

Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).

(from LymeDisease.org)

This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people if passed. We need you to help support this bill by sending a letter to your senator! It won’t take long, please do it because numbers matter. The more that our state senators see how many people in how many states care about this, the bigger the chance it passes. If you are reading this, you have been touched by Lyme in some way. Please help.

Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured?  Continue reading “Life without major relapses”