January 24, 2014 at 5:31 am #14753
Hey Yall. This is my first post, though I am a long-time lurker.
Without telling my whole story, I’d like to open a serious discussion on environmental mold exposure for those who are familiar. I had crazy bad systemic/sucky/autoimmune problems begin very suddenly, and at the same time as my roommate, which ultimately led to us getting tested by Real Time Labs for urinary mycotoxins, and we were both said to have tricothecenes (T-2, yellow rain) “present”. For instance, my results were ~2ppb, when 0.2ppb is considered “present”, whereby “present” at this cutoff was determined in a study to be nearly 100% sensitive (meaning if you test >0.2ppb you ALMOST ALWAYS have had current environmental mold exposure, though <0.2ppb could indicate having or not having mold exposure).
Well, we began the charcoal, cholestyramine, IR sauna therapy, etc., and it only made us worse. This got me thinking about other possibilities of our health problems, which ultimately led me to Matt Stone here. I’ve been (in hindsight, as I never thought of this before) an orthorexic athletica type of person since I was about 10 (I’m now 26). My ways served me well, as far as I can tell, with overall great health, skin, teeth…UNTIL a few years ago which happens to be about 1-2 years after I started a low carb paleo thing (I used to be a low fat, high everything else kind of person). And on top of that, my roommate, following my brilliance, has eaten the same way I have. Both of our symptoms I think COULD be merely the result of diet-induced illness, but they also could be mold-related.
So, since our mold treatment and everything else failed, I figured we’d try something else. So, we both have been eating like I figure a recovering anorexic should as of this last fall, and we have seen some good, though not great and very incomplete, benefits. As for my positive mold test, well I understand that hypothyroidism/hypometabolism decreases exctretory/detox pathways which could lead to a hypothetical accumulation of environmental junk (metals, molds, plastics, etc.); maybe that’s part of it.
I hope eating will resolve this, and though we are now renting another home together (with our potentially mold-infested home just collecting dust right now while we sort everything out), I’d love to think that my orthorexic idiocy caused this whole thing (as traumatic as that would be considering years ruined, health down the drain, money thrown away, house problems, alienation of neighbors and friends, etc.), since theoretically eating will resolve this all in time. However, if mold is the problem, simply eating may not only not fully help, but it may be more damaging with mycotoxin-induced crazy digestive problems and immune dysregulations and allergy reactions. In reality, I suspect mold is playing a role, but since the exposure would have coincided with my low carb stupidity, I think the severity of our decline is likely the combination.
But I’d love to know for others out there, if they have any experience with or thought on environmental mold and mycotoxins illness. I’d be especially interested in those who’ve been diagnosed and/or have even had positive mycotoxin tests. Any thoughts at all, even highly theoretical, are much welcomed.
Thanks.February 7, 2014 at 8:38 pm #15017The Real AmyModerator
Was this a new place you moved into when you started having health issues? Are you feeling better in the new home? Also did you have the mold apartment actually environmentally tested for mold? Or it was just conjecture based on blood tests? I don’t know if I would buy it just based on blood tests, personally.
The thing with mold is, people’s reactions to it can be more or less severe. There may well be a mold issue, but you might not have had such a bad reaction if you hadn’t been on low-carb. It’s pretty common reaction to have allergies and immune conditions worsen on low-carb. My guess is it’s a bit of both. The mold probably is there (but it’s hard to totally avoid mold), but your reaction was made worse by the diet. Best to fix both in the meantime, I guess!February 12, 2014 at 10:30 pm #15125
The Real Amy,
Thanks for your response. Moving out didn’t definitively change anything, though I have read this can be true of mold patients since the mycotoxins are still present and recirculating. I think, at this point, diet restrictions and other things have played the bigger part, but I will be unable to fully tell for sure until this whole thing is resolved. That’s one reason I am hoping for some comments from others in similar boats, and/or I hope to help any future readers who find themselves in similar situations to where I have found myself.
For those interested in mold literature, William Rea from Dallas is considered one of the best Environmental Doctors today, and he has written some good stuff. That being said, I think one day I may need to get in contact with Rea and begin to present what I have come to believe is a more complete picture of ‘environmental illness’ based on overall metabolism and immune function/dysfunction.
For interested parties, below are a couple articles from Rea:
The second is gold, and is a summary of case studies. If you don’t have full access, the below link (for the moment anyway) offers the full paper as a pdf.
I would like to re-iterate to any future readers that I followed the ‘protocol’ of infrared sauna therapy and cholestyramine binding for many months (after I moved out of the suspected source), as per the established protocol, but I did not notice any benefit whatsoever. In the paper, supposedly all the patients recovered mostly or fully within a few months. Still my urine mycotoxins were high. Now after several months of refeeding, many of my symptoms have begun to improve. Nothing radical, but definite, objective improvement.March 21, 2014 at 3:45 pm #16006MtnBoiParticipant
Thanks for the posts. My wife feels she has mold illness and has been doing the protocol outlined by Ritchie Shoemaker (Cholestyromine, mineral soaks, etc. but hasn’t done IR sauna). She’s was doing GAPS and now is doing low carb/paleo eating and has lost some weight and feels pretty good, but still has chemical, food sensitivities (esp. sugar). I found Matt about a year ago and am doing much better with eating (esp. carbs). Maybe I can get her to read some posts here on the forum and get her to rethink things. I wish I had answers for you. Best wishes on your recovery. Post back with progress please.March 21, 2014 at 4:32 pm #16007
I thank you for your well wishes. I wish you and your wife the same!
I have mixed feelings about everything these days, and the more I learn the more I feel confident everyone is wrong, but also the less I feel confident about what is right (if anything).
Symptomatically, sauna, charcoal, cholestyramine did not help. And after about 6 months of these diligently, my urine mycotoxins results went up slightly (got a little worse; lab through Real Time Labs). On top of this, I had moved out, left behind pretty much everything except washable towels and clothes (got new beds, new shoes, dishes, etc.).
‘Refeeding’ with whatever I craved really helped for the first 3-6 months, but then I plateaued/regressed. I have since started taking a multivitamin which I think has helped. As I mentioned in my original post, I have a history of restrictive eating, most notably a 4-5 year stint with the low carb paleo thing, and I suspect I built up a few deficiencies during this time. Increased calories and carbs from refeeding precipitated the deficiency symptoms (this is common in, for instance, anorexics). Copper and thiamin (B1) and B6, in particular, tend to be lowish in the modern interpretation of the ‘paleo’ diet, and supplementing these has helped me substantially within hours. (Though it wasn’t the CURE or anything).
As for Shoemaker, I think the method is partially correct. But leaching was common in medieval medicine practices, too, and it often did more harm than good (in fact, the old english for ‘physician’ is best transliterated ‘leech’).
There’s a couple thing to keep in mind:
1) A proper ‘metabolism’ and the hormones that regulate it are also responsible to maintain excretory/detox pathways, without which junk will be accumulated. If someone becomes, for instance, hypothyroid, he/she will accumulate heavy metals, plastics, molds. These environmental toxins can worsen the health still further, but they are not the cause. Besides testing positive for mycotoxins, I also tested positive for urine arsenic. I have no known source of arsenic, so that’s when I began to think things were fishy.
2) Whether or not the initial cause of bad health is, let’s say, mold, if the result is both mold accumulation AND hypothyroidism (read: full body shutdown of any kind), then attempting to leech the mycotoxins via therapies that only encourage the body’s own excretory pathways (pathways which aren’t working well) will not work well. And in the meantime, the body’s nutrients will be leeched leading to increased likelihood of nutrient deficiencies and further metabolic shutdown.
3) Restrictive diets, in particular low carb diets, often feel great for those who have intestinal issues due to overall bad health (again, which may or may not be CAUSED by molds). But these restrictive practices may create further deficiencies and do further harm to the metabolism and body.
Take my advice with a grain of salt, but I would encourage your wife:
A) If she hasn’t already, to get official urine mycotoxins tests with Real Time Labs. A lot of symptoms ‘mimic’ mold toxicity, and I think ‘environmental mold illness’ is like ‘Lyme’ and ‘candida’, which are very serious diseases some people actually do have, but most are just thrown onto the pile because they have some odd compilation of symptoms that no doctor knows how to deal with.
Real Time Labs are THE standard for this.
If the results come back negative, consider the fact that she does not have mold toxicity. If they come back ?positive?, consider the fact that she may or may not have mold toxicity as a primary issue. Either way, don’t let her leech herself too many months in a row. I think 3 months in a row should be considered a maximum, before at least 3 months of eating and NOT using cholestyramine and whatever else.
B) As for diet, I would beg your wife to NOT engage in restricting any whole classes of foods (such as ?carbs? or ‘starches?). I would make sure she eats plenty of calories and follows her apatite. The body is designed to inform us when we have a need for a certain type of nutrient, but only if it is introduced to enough foodstuffs to be able to ?know? from where each nutrient comes.
C) Consider supplementing with a decent, non-massive-dose multivitamin to see if she may have any long-standing nutrient deficiency. I like to combine a few things:
These are just what I do and something to consider. Cholestryamine is known to leech nutrients, so she may find that it helps.
As for non-mold blood tests, I have been tested for many things at my own prerogative. Now that my insurance sucks due to the whole health care ordeal, I often use directlabs, walkin labs, and life extension blood tests. Many of my blood results have been very screwy since I got sick, and I would be glad to share with you if you ever wanted that.
This post is just a smattering of thoughts. I in no way mean to patronize you or anything. I think you should do what works. But it is good to know that many things seem to work for a while, before they then make you crash and burn. I think restrictive diets fit into this category.
I will keep this stream updated with my progress as time goes on, but at the moment I don’t seem to be worsening or improving.
Cheers.March 24, 2014 at 4:28 pm #16027MtnBoiParticipant
Thanks for the reply. It’s very frustrating to me to see her go from one idea to another on the cause of her health problems and dive headlong into the ‘treatment’. I suspect that proper nutrition and some treatments could fix things, but trying to figure out what the magic combination is, seems nearly impossible to me. Maybe it’s not really feasible either because stress is another huge factor. She’s a type A personality and we’re raising 6 kids. Four are adopted, three have attachment issues, one has dyslexia and one has Cerebral Palsy. So yeah, we’re screwed! :)
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