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» LymeNet Flash » Questions and Discussion » Medical Questions » toxic mold syndrome...?

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Author Topic: toxic mold syndrome...?
Melanie Reber
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So, I am finally in the process of purchasing the home I have been living in for the last 11 years.

Part of the deal, was for the current owner to empty the basement, which is unfinished, of all his things so I can actually occupy the entire space.

In advance of that, I have spent weeks organizing, cleaning, and throwing out old boxes, etc.

This, of course kicked up a LOT of dust, cobwebs, and who knows what else, but also in the process, I have become VERY ill again.

So, I found a Facebook page that is for old houses (mine is 107 years old) and in asking questions about remediation, I have found out- rather late in the game- just how dangerous mold exposure actually is.

Today, I decided that this is left to professionals, but in my never ending research for some answers, I looked up mold toxicity... OMGoodness, I have every F-ing symptom on the list.

Now, I know that these are also TBD symptoms, and that is why I have sort of ignored them... until Now.

https://www.psychologytoday.com/us/blog/holistic-psychiatry/201708/mold-toxicity-common-cause-psychiatric-symptoms

Mold toxicity can manifest with so many different and diverse symptoms, that it is frequently misdiagnosed. It is likely that some cases of chronic fatigue, fibromyalgia, mast cell activation disorder, histamine intolerance, irritable bowel and leaky gut, multiple sclerosis and post-treatment Lyme syndrome, which do not respond to treatment, are due to a chronic inflammatory response caused by toxic mold. Unfortunately mold toxicity is not on the radar of many practitioners, and thus they do not include it as part of the differential diagnosis.

Some of the common symptoms of toxic mold and CIRS are:
1. Fatigue
2. Weakness
3. Aches
4. Muscle Cramps
5. Unusual Pain
6. Ice Pick Pain
7. Headache
8. Light Sensitivity
9. Red Eyes
10. Blurred Vision
11. Tearing
12. Sinus Problems
13. Cough
14. Shortness of Breath
15. Abdominal Pain
16. Diarrhea
17. Joint Pain
18. Morning Stiffness
19. Memory Issues
20. Focus/Concentration Issues
21. Word Recollection Issues
22. Decreased Learning of New Knowledge
23. Confusion
24. Disorientation
25. Skin Sensitivity
26. Mood Swings
27. Appetite Swings
28. Sweats (especially night sweats)
29. Temperature Regulation or Dysregulation Problems
30. Excessive Thirst
31. Increased Urination
32. Static Shocks
33. Numbness
34. Tingling
35. Vertigo
36. Metallic Taste
37. Tremors

Note the mention of LYME.

[ 08-11-2021, 10:43 AM: Message edited by: Melanie Reber ]

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Rumigirl
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OMG, somehow I didn't realize that mold toxicity can also cause numbness and tingling, in addition to Lyme.

My LLMD wanted me to first remediate the mold or get permanently out of our apartment before putting me on IV abx again. I realized that I can't wait that long though, as the severe neuropathy and pain is unbearable and rapidly progressing. I won't be able to walk if I wait a few months.

But looking at this list . . yikes!! I can only imagine that you are also overwhelmed with the situation. My sympathies. It looks like we're Lyme & mold buddies now. Sigh.

Can you back out of buying the house and move elsewhere? But that is also a lot to deal with. And the housing market now is through the roof. It's unsustainable.

[ 08-12-2021, 02:02 AM: Message edited by: Rumigirl ]

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Lymetoo
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Oh no, Mel. It is definitely a HUGE issue!!

I would also consider backing out of the deal, as Rumi suggested ... if you can.

Remediation is hard on people for sure!!

We dealt with mold over the past 2-3 years and I truly thought it was going to kill me.

Call in the experts and get medical help too!

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Opinions, not medical advice!

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S13
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I once thought i had mold issues. But mold triggers mast cells.
And mast cells can be triggered by many more things, ultimately resulting in similar symptom manifestation. So turns out my mast cells freak out by many things, but mold wasnt an issue.

And I guess this is more of a US thing? I was kinda shocked to see how in the US they build houses out of just wood and drywall? Thats a recipe for mold issues right there if you ask me.
In europe houses are generally build from bricks and concrete, so mold toxicity is less of a thing.

Makes you think how many americans could be sick just from living in their own house!

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Melanie Reber
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OMGosh, every freaking time... I forget to hit the email notifications button prior to posting something new. Sorry for ignoring your replies, I simply didn't know there were replies. [Wink]
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Melanie Reber
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Yes, I have uncovered yet another rabbit hole to squirm through. Currently, the basement is shut tighter than a drum and NO ONE is allowed down there until the current owners' home insurance company gets back to us on what protocol to proceed with. So, then we will have it professionally tested and remediated.

NO, I am not leaving as this IS my forever home. I have watched far too many home improvement shows to know that things can always be turned around. It just takes time and a whole lot of $$$ being thrown at it. And that is something I and the current owners are willing to do (actually, legally, HAVE to do). They called me yesterday morning right after I started researching things because they were concerned about my current condition and the possible mold exposure issues. When they said that perhaps they would not want to sell the house to me, I immediately broke down- that is just how much this means to me.

So, we will slow things way down for now and bite off one piece at a time. In the meantime, I have also discovered that it is a strong possibility that there could be another issue at play- radon poisoning. So, I have ordered a short term test kit to either eliminate or uncover this issue.

Rumigirl- This is a very big problem for those of us who are not getting well. I started to read about Shoemakers(?) research and then got distracted in trying to remember if I was tested for and found positive for the HDR or HDL or some such mutated gene, that very few people carry which does not allow them to detox normally.

Then, I got distracted again, and took the VCST test. I failed it of course. Anyway, I then remembered that when I first started seeing Dr. J in SC in 2003, I had the most difficult time with his new very intense protocol. Difficult is an understatement, because I actually thought I was not going to make it. Fortunately, Tincup was keeping a close eye on me then, and she got me to disclose just how awful I felt. I remember telling her, reluctantly so, that 'I felt as if every cell of my being was dying'.

She had me stop everything and put in an emergency call to the good doc. He totally agreed that I needed to stop until things cleared a little, and then restart, but at a much slower pace. On my next visit, he did test me for that specific mutated gene, and I was positive.

So, my very limited research on TMS thus far has taught me that this is indeed a HUGE problem, and yes a hugely unknown problem for many many people. And you will never be well until this underlying issue is dealt with. First, the real lingering problem, mold exposure, has to be eliminated, and secondly, the physical consequences have to be remediated in your body. That is a slow process, but doable.

Miss Toots- I am so sorry to know you went through this- yes, it is rather nightmarish! I knew there was an issue, but did not realize just how enormous of an issue until I found a Facebook group on old houses! Well, I became convinced rather quickly that this was nothing to sneeze at- HA!

S13- I was just touching on that part of the puzzle when I got distracted again. This time with life stuff that couldn't be put off. Mast cell issues is a topic I have yet to explore, but it seems to be all connected. yes, it does make a person think about how many waking dead are walking around with this and can't figure it out. That was actually part of what I learned. Take care of you.

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Lymetoo
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quote:
Originally posted by S13:


Makes you think how many americans could be sick just from living in their own house!

LOTS and LOTS!!

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--Lymetutu--
Opinions, not medical advice!

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Melanie Reber
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Really good, easy to read and understand, article from my docs website on mold illness.

https://www.naturemedclinic.com/does-toxic-mold-cause-allergies-or-illness/

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aklnwlf
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Great info!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Melanie Reber
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I have long admired Dr. Amen and the groundbreaking work he does. Here is another great link to his website on mold issues. NOTE: the first story is from a woman in Arizona. Yes, dry, desert, no mold allowed, Arizona!

https://www.amenclinics.com/blog/the-hidden-menace-mold-and-mycotoxins/

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aklnwlf
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I react very badly to any mold. I run an air purifier 24/7 and use an ozone machine periodically. We've had a leaky roof and also improper drainage of our evaporator coils of the AC. I'm sure there's still mold in the AC but it's not as bad since we had a pump installed. Also I had a bout of anaphylaxis from eating some cheese ball at Christmas that contained blue cheese and walnuts.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lassie27
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There is a Dr. H in Virginia who provides some great lectures on his theory of lyme/mold type illnesses or any biotoxin illness. I am not sure if it is allowed to post the link? Many questions on how these illnesses are related are answered in his lecture series. Is anyone familiar or feel this is accurate? pm me for a link to the lecture
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onebeed
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I spent a year and a half treating Lyme (had a positive IGenex test), and got worse. It wasn't until I took a RealTime labs test that I found out Stachybotrys was a major problem for me. (toxic black mold). It caused major nerve damage and other problems for me. It was THE major problem. I think many Lymies have this issue and have no idea. I started treating, remediated, learned how to avoid mold in my home and food (food is very moldy, like grain moldering in grain silos, etc.)I am much better now, but I think the nerve damage was permanent. Mold is nothing to ignore.
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Melanie Reber
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Well, 3 weeks later, and the homeowner has FINALLY told me this morning to just go ahead and hire someone myself. I am NOT very good at waiting and wondering what the hell is going on, when those that be will not communicate effectively.

Oh well, MY guy will be here Monday morning to do the testing- so at last, something is happening. There has also been talk of not wanting to sell to me again. This time, I could NOT talk them out of it. HEARTBREAK for the last week on that front.

So, as it stands today on the sale, we are waiting (not so patiently on my end) to see what the results say. And the optimist in me wants to think that perhaps it isn't as bad as we think. Perhaps all my illness, is indeed ONLY TBDs.

If you are one to send good juju- please, I can sure use it now. [Smile]

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Lymetoo
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Well, it would be very sad to lost it .. but that's better than losing your life.

Prayers for you, Melanie!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Melanie Reber
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Yes, Miss Toots, reluctantly, I do agree with you. At this late stage in the game, I HAVE learned how to recognize a losing battle... and presently, I just don't have much fight left in me.

The results of the mold testing should come back this evening- so time will tell.

In the interim, Hemingway, my adoptive kitty and I are living at the La Quinta. I have scheduled a blood test for her and am trying to do the same for myself.

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Melanie Reber
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Adding... I actually learned many things from my mold guy. Mold can be live or dead (dormant). Most homes contain both. There are hundreds of thousands of species of mold, and it is naturally occurring in the soil. So, for me, who loves to play in the dirt and derives GREAT pleasure in composting... these will both have to be put on hold until I am well. And even then, with great caution and care.

I remembered Dr. J. giving me a very dirty look, well, more like a don't you realize what you are doing look, when I told him that I loved to compost years ago. (we both shared a love of gardening) [Wink]

Also, when I started to disrupt the dead mold in the basement while cleaning (guess who also cleaned out their garage in the same manner that same week?), it actually caused it to float around and become airborne. Then, by adding the moisture of my evaporative cooler... well, in my ignorance, I set up a perfect storm.

(BTW, turns out my evaporative cooler pads were also very moldy, and have since been changed) [Roll Eyes]

So, there is NO DOUBT that I have lots of lovely mold spores floating around now- it is just a question of what kind and IF those are dangerous.

AND, what may not be considered 'dangerous' for others will most likely NOT be the case for those who are already immuno-compromised AND who have that funky gene (HLA, HDL ? can't remember and my records are in the basement, so can't look it up now) that means they do NOT detox well.

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Lymetoo
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Here ya go

https://moldblogger.com/the-hla-dr-gene-and-mold-sensitivity/

Yes, we had mold that was considered safe, but NOT for me!

I hope it's all gone. I feel pretty good now.

Hope the test comes back today, Mel.

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Opinions, not medical advice!

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Melanie Reber
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OMGoodness, you are THE BEST!!!!!! Now I have something for late night reading. Love you Miss T! <3
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Rumigirl
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So what showed up, Melanie??

(I'm dealing with the same thing, only with a landlord. And trying to move where we are would be completely unaffordable, especially in this crazy housing market gone nuts!

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Melanie Reber
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Oh, Rumigirl... THAT is a loaded question!!!!!

Yes, the housing market is insane right now- and is most certainly playing into my current situation!

First, I ordered a GREAT book, that I think everyone one of us who is NOT getting well should have in their possession. I have been devouring this incredible information between trying to contend with my Mom's situation (she was affected by hurricane Ida), my cat's situation (most likely suffering the same things I am), MY medical issues (getting tests, scheduling meds, etc, etc, and just NOT feeling well at all), and housing decisions (homeowner will not finance the sell, and is giving me a limited time to figure it all out on my own).

So, the book is TOXIC, by Dr. Neil Nathan https://www.google.com/search?channel=nus5&client=firefox-b-1-d&q=toxic+neil+nathan
I ordered through Amazon about a month ago, but then didn't have time to actually start reading it until last week.

OMGOODNESS, sooooooo much good info and so very easy to read, even with compromised abilities. It is on my LONG list of things to do to send an email to him to try and start my road to recovery. [Wink]

OK, so getting back to my mold testing results: YES, there are at least 6 known species of mold currently living in my home and a few more just labeled 'others'. Including the most toxic types. And, the worst areas are places that I would not have even thought to look for AND where I spend the majority of my time - in my bathroom ceiling, in my dining room ceiling and in the basement room that I have always used as my sewing room.

Keep in mind that he only tested 8 areas with air capture and swab, but saw much more than he tested. His report states that the worst areas need mitigation with all the bells and whistles of air lock, hazmat suites, etc. The radon test results also cam back with elevated levels 4 times what is considered safe. Actually, NO radon in the home is considered safe according to the EPA, but most homes have an average level of 1 point something or other. My test came back with a 4.3 level which means the home needs to be mitigated immediately.

My lead blood test came back slightly elevated but still in the 'normal' range. So, that at least was good news, however, I am now reading that I need to make sure that the test used was actually the right one that gives the most accurate results- still working on that one.

So, back to the mold situation. I have learned that all mold makes spores. All spores releases toxins, some more potent than others. So, there is a urine test to actually measure the specific MYCOTOXINS (poisonous toxins) that your body absorbs and excretes. These mycotoxins act just like our LD bacterial toxins, and release even more crap into our bodies as they die off when the body recognizes and kills them. So, this is why so many people feel like crap when treating for TBDs and for mold toxins. It is a long, complicated and very delicate process to recover - but recovery IS possible with very careful attention to how your body responds to treatment. So, that gives me great hope.

What I did not realize is that these airborne toxic spores can be absorbed by inhalation, ingestion AND transdermally! So, every F-ing thing in my home is covered in spores and needs to be cleaned. AND, even more alarming... every F-ing thing that I took from my home is also covered in spores, and has the potential to reinfect me. Including my electronics, my car, really everything!

Believe me, I DO know how drastic this sounds and most people would think that I am being dramatic and over reacting... however, I am NOT prone to drama, and am NOT prone to over reacting - this is all based on sound science and my admittedly limited research.

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Melanie Reber
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Adding- so my first priority has been to help my Mom out this last week and to make certain that she is safe and has a plan to move forward.

My next priority has been to get my cat into the vet for a wellness check and to make certain that she is not suffering the same thing I am.

After that, I have been juggling my housing situation and my medical situation and my work situation.

It's a LOT to deal with at one time right now, especially when my head is constantly dizzy, spinning, and head achy. My vision is sporadically blurry, I feel nauseous, have difficulty just standing still, much less walking, can hardly breath and am enduring extreme muscle spasms. (yeah, poor me, I know)

I have allowed myself to feel sorry for myself a time or two, but quickly realize that I don't have time for that right now either, as I MUST continue to move forward because time is NOT on my side currently.

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LisaK
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I have TONS of mold issues / was treated and tested for all kinds.
We live in a mold house. not terribly moldy, but any mold affects me... the entire area where we live is moldy. but to move would mean leaving my now pregnant daughter and her husband..

I wish we would have moved to a dry climate 20 years ago...

good luck and "when in doubt, don't" is always a good rule to follow.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Rumigirl
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Wow, Melanie, so now what?? That's the $64,000 question, I'm sure. However, $64,000 doesn't take you as far as it did back then.

I'm stuck, due to competing issues at play in my treatment and the mold situation with the landlord. Ugh. Lots more work to dol

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Melanie Reber
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Hey LisaK, it has been awhile since I've seen you. It sounds like you have quite the dilemma and I am so sorry that your choices feel limited right now. Interestingly enough, if you look back up, I posted a link to Dr. Amen's website and the main story is about a woman who acquired TMS while living in Arizona. So, you see, the problem can happen anywhere really (much like ticks are everywhere, but we have been conditioned to believe that they only reside on the coasts)

'When in doubt, don't' is VERY good advice, indeed! I have tried to follow that same advice over the years in many many ways - if a decision doesn't manifest or doesn't feel right, or seem clear, I usually wait until I am confident in moving forward.

There are rather a few helpful products that you can purchase to try and mitigate some mold issues yourself, so that might be a starting place for you? Here is a GREAT website that explains how to clean just about everything and I have begun following this advice for the last week. https://moldfreeliving.com/

I'm still waiting for the special spay and laundry detergent and candles to come in the mail. So far, I have only attempted to clean my computer, because that is my lifeline. It was rather daunting and took all morning, but my IT Guru helped me out tremendously with remote information and gave me the confidence that I could actually do this. Hopefully, it isn't reinfecting me too much now- we will see, as the test petri dishes are still incubating for a few days.

Thank you and the best of luck to you and your family also.

Rumigirl, hahaha, thank you, I needed that smile this morning- you have NO ideal how very much!!! So, as it stands today (I am qualifying that because it seems like plans change very quickly around here), I have finally moved into the adjoining side of the home (it is a duplex). The renters in this side vacated on the 10th, so the owners are allowing me to stay here for 3 months until I can get this all sorted out. And by 'moved' please understand that I walked through the front door with absolutely NOTHING, except the contaminated clothes on my back, my phone and my cat. So, 'moving in' was quite easy.

Everything else that I owned was either left on my side, sealed into plastic bags, or thrown away if I knew it could not be cleaned. I have spent the last 11 days just trying to set up the basic necessities of living- food, clothing, medicine, cat food, toilet paper, etc,. etc, Frankly, it has been exhausting, and today, I am so very tired and weary.

Normally, I have unlimited energy when things must be done, but after 5 1/2 months of this, with little to no sleep, and being in constant pain... I'm feeling today, that I'm just at my breaking point and I'm over it. I had to order another TOXIC book, because my book was contaminated. All my paperwork, computers, etc., for work are contaminated. Really EVERYTHING I own is contaminated. So, the things that I can clean, like laundry (although I don't have the special detergent yet), or other hard surface objects like a spoon or a comb... I have taken into the 'clean side' one by one and cleaned it. Hour after hour, standing over the hot sink of soapy water, sweat pouring down my face, my body aching and head spinning... one thing at a time.

Soooo, now that I have the basics here, like food, clothes, a table and chair, a clean computer (we hope)... I can now get to work trying to figure out how to get well. Because if I can't do that, then nothing else matters really.

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
LisaK
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Melanie, thank you!
We have been using the Mc3 for quite a while now and it it all does help some, but not a cure for the house. We even bought the fogger.

Our area is just so "moist" all the time. [Frown]

thanks for the link!

My issue now is that even though my mycotoxin (urine) test is now in normal range YAY!!! the particles still bother me quite a bit and I will probably never be totally healthy or free from that.

Keep us posted on your progress! I am happy you are able to have energy! that is more than half the battle. [Smile]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Melanie Reber
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Hey LisaK- I was a little dubious about the Mc3 products, so I asked my stepson who has a degree in cellular and molecular biology- he said that he was 100% certain that these products would help... and ya know, I really do think they have now that I have been using them for about a week. I do plan on getting the fogger so I can fog the hell out of my side in order to get back in there to get mitigation estimates.

I am actually starting a 5 day provoke challenge for the RealTime Labs Mycotoxin panel urine test, today. I am so hopeful that this will give me an accurate picture of what is truly going on, or at least a sound place to start.

My big issue right now, is that I keep finding more and more sources of mold in this 'clean' side!$%$#@!!!! So, I have been a Tazmainian devil trying to sleuth them out and clean them to the best of my ability. Ive developed quite the nose for musty and odd smells... so I just follow my nose. The only thing is, if I can smell it, then I am also being further exposed directly by inhalation. What's a gal to do?

Being Colorado, our weather this time of year is quite sporadic, needing the A/C in the afternoon, and the Heat in the morning. The other morning I woke to 37 degrees again, and rushed at 3am, to close all the windows and turn the heat on. Within 30 seconds, I smelled a very dusty musty odor and immediately felt light headed, dizzy and swoony (is that a word?).

So, today, I am making it a priority to secure a company who will come out and thoroughly clean and sanitize all the HVAC systems! My God, it is never ending. I've been digging into every drain and clearing out the most putrid black gunk... ripping up old musty carpeting and pinsol-ing all the wood floors underneath. etc., etc., etc.

So, the good news is that I found another FABULOUS book that I have been devouring when I can find the extra time and energy for reading. It is called 'Break the MOLD', and wow, I feel it was written especially to me at times! I HIGHLY recommend it!!!!!

https://smile.amazon.com/dp/1988645182?psc=1&ref=ppx_yo2_dt_b_product_details

The not so good news is that they have found ASBESTOS in my bathroom and hallway ceilings and walls... so before we can even tackle the black mold, the asbestos must be mitigated first.

This is me raising my hand...........

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
LisaK
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Sounds like you have it all under control Mellanie!

I wish my body and brain would work like yours!!
[Smile]

[ 10-27-2021, 12:12 AM: Message edited by: LisaK ]

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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hiker53
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Wow, Melanie.

You have a lot to handle.

So, did you move to your dream house? And that is the house you are clearing of asbestos and mold?

We had asbestos at the school I worked for. Teacher could see it in her potted plants and the whole school had to pack up midyear and move to different schools. I had one day to pack up my science materials for 4 months of teaching. Crazy.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 7055 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
   

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