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.

 

 

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 :).

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”

Strain-based immunity?

Strain-based immunity?

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.

Evidence for Erlichiosis transfer by Blood Transfusions

Evidence for Erlichiosis transfer by Blood Transfusions

“A 9-year-old Georgia boy who developed a rare tick-borne disease got the infection from a blood transfusion, according to a report of his case.

The case is the first time this infection, called ehrlichiosis, was spread by a transfusion, said Dr. Joanna Regan of the Centers for Disease Control and Prevention.”