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).

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.

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.

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 spirochetes; MS 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.

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 :).

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.

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? 

I am grateful every day for my energy and stamina. However… I still have an invisible and very real illness. I believe that my symptoms and stamina are so high in part because I am very careful about two crucial things: Sleep and diet. All else being equal (which of course is not the case for many people much of the time), sleep and diet help my resilience. If I am resilient and my immune system is well supported, then I can bounce back more easily when something happens, whether it is bad luck (a cold), lack of discipline (yes, we all have that!), or a choice (such as travel, especially a work trip).

For sleep, my general goal is a regular bedtime, adjusted to around 9pm when I’m feeling worse, and before 11pm when I’m feeling better. I never set an alarm but usually wake up around 6:30am. For diet, I eat a lot of vegetables, fermented foods (kombucha and yogurt mostly), grass feed / free range meat, almost no wheat, and generally very little starch. Fruit as well, though much less than vegetables.

This doesn’t mean I never have bad days. Those are there, and they are my reminder to keep up the work of watching sleep and diet. They also keep me grateful for the good :). It does not mean travel is the same for me as a colleague or family member. It just means that when my symptoms flare up, they are less likely to spiral down into a full-blown relapse. And after 2 years of no major relapse it means I am more willing to trust that if I have a bad day, it won’t become a bad semester.

So I did a couple of things to make the trip easier — timed it to avoid very light nights or early mornings; brought my cane with me; skipped to the front of the line if I was starting to feel fatigued; even accepted transport at one point in the airport. The travel was painful and tiring, and at one point I wondered, as I often do over the years, whether I was just being wimpy (or pick your adjective). But some switch flipped and on the last of the four flights involved in this trip, I felt normal. Travel tired, yes. But painfully tired, in that intense way that the other flights were, no. It reminded me what normal travel used to be, and was such a contrast to the rest of the trip that I was almost skipping my way down the airport. This lasted until partway home, when I crashed. It’s always been an unexpected blessing to me that I get these little windows into normal in between the difficult, I think they are there to remind me what to aim for. At any rate, I came home and took a day off to recuperate. Right now is day two and I am lying in bed having just slept over 13 hours with swollen lymph nodes, a headache, a sore back, and fatigue.On the upside, I did not have trouble sleeping and I am hoping that after a few more slow days this will begin to fade. Could be jet lag (4 day trip, very intense, 3 hour time change both ways); feels like jet lag++. And I trust my gut that it is more thanks to my brief reminder of what less is.

Anyway I just wanted to share one small window into what ‘better’ means for me.

This news article highlights results from a study exploring whether people exposed to a particular strain of Lyme disease are immune to that strain for any length of time. The news article gives a nice layman’s summary of the research article. The main result is that it seems statistically more likely that the participants were immune to the strain they were re-infected with for some time, since the strains present in their subsequent infections tended to be different than the strain present in their initial infection. The participants in this study only included people who had multiple culture-confirmed erythema migrans rashes. Blood and skin were cultured to identify Bb strains could be extracted. In addition, the participants were treated ‘with standard courses of antibiotics’ after each rash (I read this as ~3 weeks oral doxy), at which point the rash resolved. Participants had evidence of disseminated infection before treatment, meaning the results cannot be attributed to only involving people who were just infected and quickly and decisively treated. Most participants were infected at least a year after their initial infection. 

There is no arguing with the fact that participants in the study had been infected with multiple strains, likely at different times. However, the authors do not address the question of whether the original strain could still be present and even symptom causing, just not implicated in the rash. The authors do state that ‘our findings do not support the hypothesis that relapses in antibiotic-treated patients would be more likely to be culture-negative’ and then go on to say that 63% of participants had a culture positive second episode. However, since the inclusion criteria for the study was to have a rash, which indicates some sort of presence of Bb on the skin, it is not surprising to me that culturing was relatively successful (I do not have a reference handy to back up the idea that rashes would be easier to culture, does anyone know of one?). In addition, if rashes are associated with early stage infection the inclusion criteria may even have biased the study toward people who are likely to have been re-infected. So one possible explanation for the results is that people developed immunity. But I think another possible explanation is that when people were re-infected with new strains, they developed new erythema migrans rashes. However, when people are re-infected with or relapsing from strains with which they were previously infected, they are harder to culture and their symptoms express in other ways. The authors do not address this possibility in their article.

• Down from a distance — 1/2 step at a time — rope play as reward (or food). To be done at first without harness and perhaps later with it.  This will eventually translate into me giving him all sorts of commands from a distance, but it’s the first one we’ll practice.
• Let’s go — so that he always comes with me. He needs to follow where I lead in this and not pull back (or sideways, or forward too hard). After we get this on level ground in the house we’ll be working up to other locations, including out and about and on steps. The goal is to focus on places he doesn’t like, moments he tends not to listen. This will be done with harness.
• Stand and wait — We’re moving away from an automatic sit to an automatic stand whenever he’s in the harness and at my side. This can be practiced with Let’s go.
• Switch — We have decided to get a touch switch installed in my office. It’s been too hard to teach him to push a switch up (he pushes it down great). We’re practicing doing it reliably, and eventually from a distance, without the harness for now. Could do with rope play as reward. Many many repetitions.
• Door — I had been using “open” and “close” but that’s confusing because some doors are pulled to open, others are pulled to close. Also he’s getting less eager to do this. We’re changing the names to “push” (with paws) and “take” (a rope in the mouth), with me deciding which one depending on which way the door needs to move. Will practice with harness.
• Stays — work on longer stays. Daily. So easy to forget/ignore this. He just stayed nicely while I went and did something in a different room for a few minutes though :). We practiced sit and down stays that way today.

One of the challenges with Gryffin is that he does not like corrections. I have to minimize them to avoid turning him off training. And pump up the praise.

September 29
October 6
November3
December 1
6 – 9 pm

Christ Lutheran Church
910 North Avenue
Millvale, PA 15209
pghlyme@gmail.com

A new Lyme Support group is getting started in the area (about time, I think the old Etna one I have posted about before is now defunct). Hope this is of use to some of you.