Friday, October 5, 2012

Mold – “A Tough Tussle”


The fantastic writer Ambrose Bierce wrote a short story, a quite frightening piece, called “A Tough Tussle”. The story concerns a Civil War soldier’s deadly nighttime struggle with an unseen or unknown terror. “A Tough Tussle” and Brainerd Byring’s frightening incident come to mind when I think of my own experience with another unknown or unseen terror: Mold.

My daughter got sick with a neuro-immune illness in 2002 and stayed about half sick for three or four years when she went downhill.  Prior to her downhill crash in 2006 she moved to St. Paul, MN from NYC.  In St. Paul she lived in the same apartment until May 2012.

I became suspicious of the building in which my daughter lived after reading about mold as a complication for neuro-immune illnesses. I went through her entire building, attic and basement, and saw no evidence of water damage or water intrusion. I spoke to her landlord who has owned the house for thirty years, and he said that there had been no water intrusion in the time that he owned the building. Upon closer questioning he did reveal that when he first bought the building, he looked into a square hole (no longer there) in the floor of the basement and was surprised to see water, and that something floated by on the surface of the water indicating that the water was moving. This gave me an idea and I went to the historic society of St. Paul and found a map of the property prior to the house being built in 1920. It appeared from this map that the house had been built on a stream bed.

Over a period of several years I did two ERMI tests of my daughter’s apartment and they were both high. They registered 11 and then 7, both with an extremely high Aureobasidium pullulans.  As with all molds it is difficult to find out much about this strain  - except that it is associated with water. This made sense if the house was actually built on a stream bed. Aureobasidium pullulans does not seem to be a dangerous mold, but who knows?

During these years my daughter was too sick to consider moving from the premises.

Circumstances led me to move into the apartment below my daughter. It is a two apartment building so I had control of the entire building. I was shocked in October 2011 to get an even higher ERMI test for the ground floor apartment, which I now occupied – 17, including another sky-high Aureobasidium pullulans.

With this test I decided to do what I could to remediate this building. In the next month I went over every square inch of the building, first cleaning it and then spraying every surface with a concoction of vinegar, borax, oil of oregano, vodka and clove. I cleaned and did the mold treatment on all floors, walls and ceilings including the basement and the attic. I found a small amount of mold in the basement eaves that I remediated myself.

I did another ERMI test that came down significantly but was still irritatingly high. Of course, with my remediation, I was unable to get into the walls or the floors.

At this point I bought a number of dehumidifiers and was able to lower the humidity in the basement to about 40%. It is believed that mold does not grow under 50% humidity. I was shocked to find the humidity in the attic was close to 100%. The reason for this was that the landlord had put insulation down on the floor of the attic, a short-term solution for insulation, but one that will lead to the roof rotting. I pointed this out to him, did him a favor, and took up the insulation. Thus, I was able also to lower the humidity in the attic below 50% with a dehumidifier.

This remediation was completed in November 2011, and the low humidity in the building continued until my daughter was able to move out of the apartment in May 2012.  Over that time, November 2011 to May 2012, she made slow but steady improvement with one major setback. However, she was strong enough on May 2, 2012 to make this move to an apartment ten blocks away – and the move went without incident. 

There are various other reasons – beyond mold remediation - that one might point to for her improvement – primarily the introduction of the probiotic formula MAF 314. This occurred simultaneously with the mold remediation – in October 2011.

My daughter’s slow progress has continued in her new apartment. While she is better, she still remains quite ill.  I have not done an ERMI test in the new space.

Over the last few years she has done a number of tests that measure global cytokine activity or inflammation or NK cell function. Among them are:

c4a – at Jewish National lab, Denver

In 2011 my daughter’s c4a was 15,210 (0-2830). In March 2012 it had come down to 7,377 (0-2830). I imagine that it would be even lower now. I will find out soon.

MMP-9 – at Quest

In 2010 her MMP-9 was 888 (0-985).  Disregarding the Quest lab's normal parameters, Dr. Ritchie Shoemaker says that anything over 332 is high. In March 2012 her MMP-9 was 1325 (0-985). In September 2012 her MMP-9 dropped to 272.

Functional NK (LU30) - at Focus lab

Over the past year my daughter's functional NK cell has gone from 17 to 21 to 34 (9/2012).

There is another useful test which I need to repeat. It is a urine test from Realtime labs and measures three mycotoxins.

Do I think my daughter’s illness was caused by mold? No, I do not think that mold caused her illness. Do I think that mold was a complicating factor? I think the evidence points to this, but, like all things with this illness, we will never really know. I think she lived in a sick building.

20 comments:

  1. Lisa Petrison, Ph.D.October 5, 2012 at 3:09 PM

    So glad to read that your daughter is doing better, Chris!

    Best, Lisa

    ReplyDelete
  2. Quote: There are various other reasons – beyond mold remediation - that one might point to for her improvement – primarily the introduction of the probiotic formula MAF 314, This occurred simultaneously with the mold remediation – in October 2012.

    Did your daughter just start MAF 314 within the last five days, or did you mean to say October 2011? If she has only been using it for 5 days, why do you think it has already helped her?

    I am glad she is improving, and I hope she continues to feel better and better.

    Patricia

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  3. Sorry, I meant she started the MAF 314 in October 2011.

    ReplyDelete
  4. Thank, you, Consuegra. That means there has been plenty of time to start seeing the benefits from the MAF 314. I am really glad to hear this.

    Patricia

    ReplyDelete
    Replies
    1. The best advice that I can give about taking MAF 314 is to start it and continue it. Also to start low - one tablespoon - and build slowly. The improvement is slow but steady and takes place over months. Tracking Nagalase is helpful.

      Delete
  5. Thank you for sharing this. I am curious as to whether Dr. Ritchie Shoemaker, who you quoted, has been consulted in your daughter's case, and what he may have to say about causation?

    ReplyDelete
    Replies
    1. Dr. Shoemaker does not do consultations with patient advocates. I have spoken to him briefly at several conferences and was hoping to latch onto him in Ottawa but he did not show up. I have read his books and followed as much of his advice as I could understand.

      Chris

      Delete
  6. Jonathan Lee WrightOctober 5, 2012 at 4:30 PM

    Considering the body of peer-reviewed research into the role that mold plays in illness that share all the same symptoms of "CFS" - including the work of Dr. Shoemaker - and your daughter's apparent recovery from this, I'm curious as to why you state that you don't think her illness was causedby mold, and why you feel you you are qualified to say this.

    ReplyDelete
    Replies
    1. Chris, thank you for sharing this information about your daughter's health. I'm glad to hear that she has made some gains. It seems the last few years have been incredibly difficult for all of you.

      @Jonathan, I think your tone is rude. Chris has every right to speculate about the reasons for his daughter's improvement.

      Delete
    2. Jonathan Lee WrightOctober 6, 2012 at 8:19 AM

      @ Anonymous -- my apologies if you or Chris interpret my question as rude, my intent is straightforward. Can you please identify yourself so as to diffuse any concerns with your intent regarding this highly politicized topic?

      Delete
  7. Mold and other environmental issues are clearly a component of this disease for a fair amount of people. It's odd that none of the ME / CFS "experts" even attempt to address this issue.

    ReplyDelete
  8. Yes, very odd indeed.


    http://www.cfsuntied.com/toxicmold.html

    ReplyDelete
  9. Lisa Petrison, Ph.D.October 6, 2012 at 11:57 PM

    You might be interested in the following preliminary findings from Joey at Heal Click. He suggests that people with C4a levels that are reasonably low frequently reported benefits from MAF products, but that those who had very high levels reported negative effects (e.g. having such severe inflammatory flares that they could not tolerate the MAF).

    http://blog.healclick.com/gcmaf-cfs-lyme-autism/

    I had a similar experience with antivirals. When i was living in the moldy house, even a small amount of a mild antiviral (Famvir) made me deathly sick. In a really pristine environment, pursuing extreme avoidance, I could tolerate full doses of Valcyte (900 mg) and Famvir (1000 mg) combined with almost no inflammatory flare at all, and I do think I benefited from the AV's at that point.

    So I would suggest that perhaps your daughter's improvements are related to both getting out of the mold and to the MAF 314, Chris.

    Best, Lisa

    ReplyDelete
  10. It is difficult for me to understand the resignation with which people propose that "We may never know" about the role of biotoxins in CFS, when absolutely NO EFFORT is being made to...


    uhhhh....

    Find out.


    http://www.cfsuntied.com/videosvictims.html

    ReplyDelete
    Replies
    1. Jonathan Lee WrightOctober 7, 2012 at 6:35 PM

      "We may never know" might actually be a statement rather than a presupposition.

      Delete
  11. I've also had an improvement on the MAF314 with no house move or other changes. It's been the most effective treatment that I have ever used.

    Mould avoidence didn't help me at all. It may be that in my case it's not a problem.

    It could be both treatments have helped of course.

    Hope that it continues!

    ReplyDelete
  12. At the inception of the new "CFS" syndrome, I was amazed at the phenomenon itself.

    Especially since this effect was completely unknown and unidentifiable, with all our descriptions rejected as impossible or wild exaggerations.
    The attempts to obtain investigation have unveiled an entirely separate point of interest that is also worthy of study.

    Why did all CFS researchers refuse to look?

    http://www.cfsuntied.com/videosvictims.html

    ReplyDelete
  13. It makes sense that the medical and research professions have no interest in studying anything that admits to or highlights their own deficiencies.

    But aren't patients a bit concerned that the entire medical profession has dedicated itself to suppressing information that came straight out of the inception of CFS in order to cover up the fact that they never examined the incident?

    Surely "CFS" can't be the sole exception to their mass malfeasance.
    What other clues are they crushing in other illnesses?

    ReplyDelete
  14. Mold at Ground Zero for CFS


    I am a survivor of the outbreak of mystery illness that led to the creation of Chronic Fatigue Syndrome, as profiled in the Oct. GIHN newsletter.
    The story of "Mold at Ground Zero for CFS" is told in
    Dr. Ritchie Shoemaker's books, "Mold Warriors" and Surviving Mold".

    As Jeri McClure Kurre explains in her testimony to the NIH Chronic Fatigue Syndrome Advisory Committee, no CFS researcher has ever gone back to examine the evidence.

    ---------------------------------------------------------

    "And to all of you CFS researchers who claim to be unaware of this particular evidence, I want to say this:
    You are now.

    What are you going to do about it?

    http://www.news-medical.net/news/20121016/Multi-system-exposure-related-illness-(MERI).aspx?page=2


    http://globalindoorhealthnetwork.com/files/GIHN_Newsletter_10_01_2012.pdf


    Jeri Kurre's CFSAC testimony
    http://www.cfsuntied.com/videosvictims.html

    ReplyDelete
  15. I get it! We haven't hit "The 100th Medical Monkey" yet.
    When we do, they will ALL become mysteriously "aware".

    http://cfswarrior.blogspot.com/2012/10/treatment-updatescary-episodeandmold.html

    ReplyDelete