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Lyme Mold and "Biotoxins"


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So it's the 11th hour and as i sit on the wood floor in the middle of my new "safe "unfurnished condo I question what I can take with me. My "mold guy" referred by my LLMD says my New apt is safe as he did a visual inspection and this place has no history of water damage and he did 4 air samples. BUT my old house had 3 toxic molds, when i showed him the ERMI report , he said i could take my

Sofa as it was only 1 yr old. and can be hepa vac'd and wipe wood furniture with vinegar and dry. i was happy UNTIL i read Dr Thrashers web site and realized my

Sofa may have mycotoxins?' Now I question Everything, including my LLMD who reccomended him and knows we are so sick from mold! So.....

Question is ; is it safe to take my stuff with me??!

I am literally losing my mind.

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Gosh, tough question. I have read on other message boards people really having to make a clean break from everything they had, so if you're absolutely as bad off as them, perhaps this is the time to make the clean break and leave behind the couch. Hard to know what is really needed, though, seems like so many unknowns in the world of lyme and mold. The question of how much stuff to get rid of is something you're a little ahead of the game on compared to where I am at the moment.

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Tough question indeed! We are too sick to chance it. I will be abandoning thousands of dollars worth of "stuff" today.

It's only wood and metal. Health is far more

Important. I spoke to Environmental Dr and she said to leave it behind or risk " taking my problem with me" *sigh* like I needed 1 more problem..... Now I understand why some Lyme patients are broke.

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I am so sorry you are going through this, talk about stressful!

 

I tell you what, the whole mold issue just about put me over the edge, and we didn't have to move.

I may not be popular with this, but after spending thousands of dollars, literally, and dd and I spending months on the CMS powder, (cholestrymine, sorry, wrong spelling I'm sure)

And, we had done a mold inspection, found an issue under the the water heater in the garage we had correctly fixed, but nothing else in the house, and this guy looked into EVERYTHING,

then my air samples came back clean (some of the cleanest, I was told)

then others said the air samples didn't mean a darn thing, then did ERMI tests in dd's bedroom and mine, came back a 3 and a 4, called the ERMI company,

got the Director, asked him what I should do:

He said get some Hepa air filters, okay, bought 3 of those, already had a Hepa vacuum.

 

I and dd had been on this CMS powder, multiple times a day, which pulls fats out, and we are both thin.

I did not want to do it anymore.

Our Dr. at the time wanted to continue, do thousands of dollars of more Shoemaker testing, and personally, I was not comfortable doing this protocol anymore with off label drugs.

Also, it included pulsing some Lyme and Bartonella drugs that I didn't want to pulse but actually stay on to fight our infections, which is why I was there.

 

THIS IS JUST MY OPINION, and how I felt. I felt deeply we had done enough of the mold issue (months, months)

I voiced it more than once-

I kept being pushed.

We switched Doctors.

 

I think detoxing the neurotoxins is very important, and obviously you don't want to stay in a toxic environment.

Sound like you are renting, thank goodness.

So I don't know about keeping your couch and leaving absolutely everything- old moldy books and things, yes.

I was told you could wash all clothing, towels with Borax detergent (found at Target) 2x in hot water.

I did replace a washing machine.

This post may not be popular- for some, mold was really their whole main issue.

I just felt I'd spent thousands of dollars already, it was not our main issue, and I had done a good job already.

And my then Dr. had seemed to be a bit fanatical about it.

Yes, we both have 1 'dreaded' gene, meaning we MAY not be able to detox mold and Lyme toxins well.

Edited by S & S
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Thanks S&S, we are on the Cholestyrine and it supposed to bind lyme toxins as well as mold but i really don't see improvement. I think Bartonella, babesia and possibly metals may be our real issue. I am just so F@&$ tired!

I dumped my

Sofa and fridge and i moved with a freaked out kid who's life was already ruined by lyme and now mold.

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Just want to chime in add that my entire family abandoned everything we owned as well. It did turn out to be the best thing we ever did for our health. All five of us have the dreaded gene (both my husband and i carry it---what are the odds?). We are 2.5 years out of old home. I too lived in empty house for years, we are just finally getting our house furnished again and back to normal. I will highlight points that I think were important in our recovery:

 

1. Not using the "air" system for heat or central air. We use space heaters and local window A/C units. After our immune systems were so compromised by mold we couldn't even tolerate the air system in our house that scored a "1" on an ERMI. That is supposed to be a healthy home, but we couldn't tolerate when the air was on. When off, we are not sick.

2. Cholestyramine alone is not the correct protocal for mold treatment. Certainaly removal from the environment is #1, but you also need to attack the MARCONS, and correct low MSH, removal of gluten, dairy, and corn may also play a role to help suppress inflammation---definately increase your Omega 3, 6, 9s. Have you had an ERMI done in your new environment?

4. Vasoactive Intestinal Peptide. This was a miracle drug for me. Gave me my life back--correct the hormones out of whack that messed my immune system up. Vitally important step in the mold protocal but not helpful unless you are living in a mold-free environment. Taking this drug has helped my body heal and be able to flush out the toxins that it couldn't before. I can now tolerate much more than I used to be able to.

5. Not bringing any of your moldy furnishings/pillows/blankets/etc is key. I would suggest storing them in a rented storage unit if you can afford to do so. Some day you will be able to clean most of it and get it back, but right now you are probably too sick to handle even cleaning it. It will save you thousands in the long run if you can eventually use them again. But say good-bye temporarily.

 

Feel free to PM me anytime...I know what you are going through. I lived through a mold ###### for 7 years and watched each and every member of my famiy get sickened one by one, but we are finally coming out of it and I am healthier than ever now.

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Hi, I am new to LYME research so please humor me, but what are the symptoms of mold exposure?

 

I noticed my youngest had a PANS flare when the wind started last month I finally got that under control and just this weekend we turned on the air conditioner for the first time, hit 80 here and he seemed to be agitated and mild intrusive thoughts. Also had dark circles under his eyes. After I read your post made me think it might have been the central air conditioner. I have an ecoquest air purifier it supposed to kill mold but the ozone smell is awful so we rarely use it.

 

You also mentioned a gene, can I be tested for that?

 

 

Just want to chime in add that my entire family abandoned everything we owned as well. It did turn out to be the best thing we ever did for our health. All five of us have the dreaded gene (both my husband and i carry it---what are the odds?). We are 2.5 years out of old home. I too lived in empty house for years, we are just finally getting our house furnished again and back to normal. I will highlight points that I think were important in our recovery:

 

1. Not using the "air" system for heat or central air. We use space heaters and local window A/C units. After our immune systems were so compromised by mold we couldn't even tolerate the air system in our house that scored a "1" on an ERMI. That is supposed to be a healthy home, but we couldn't tolerate when the air was on. When off, we are not sick.

2. Cholestyramine alone is not the correct protocal for mold treatment. Certainaly removal from the environment is #1, but you also need to attack the MARCONS, and correct low MSH, removal of gluten, dairy, and corn may also play a role to help suppress inflammation---definately increase your Omega 3, 6, 9s. Have you had an ERMI done in your new environment?

4. Vasoactive Intestinal Peptide. This was a miracle drug for me. Gave me my life back--correct the hormones out of whack that messed my immune system up. Vitally important step in the mold protocal but not helpful unless you are living in a mold-free environment. Taking this drug has helped my body heal and be able to flush out the toxins that it couldn't before. I can now tolerate much more than I used to be able to.

5. Not bringing any of your moldy furnishings/pillows/blankets/etc is key. I would suggest storing them in a rented storage unit if you can afford to do so. Some day you will be able to clean most of it and get it back, but right now you are probably too sick to handle even cleaning it. It will save you thousands in the long run if you can eventually use them again. But say good-bye temporarily.

 

Feel free to PM me anytime...I know what you are going through. I lived through a mold ###### for 7 years and watched each and every member of my famiy get sickened one by one, but we are finally coming out of it and I am healthier than ever now.

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5 Family members sickened, each of us had all different symptoms but I'll list what I can remember:

tics

tremors

numbness/tingling

sore joints/arthritis

balance problems

brain fog

chronic fatigue

chronic headaches

tinnitus

spots in vision

ocd

add

adhd

sleep apnea

bed wetters

cold uticaria/uticaria

chronic ear infections

chronic sinus infections

allergies to everything

swollen face/dark circles

acne/boils

 

and more!

My misdiagnoses were: lyme disease, chronic fatigue syndrome, fibromyalgia, MS.

 

You can be tested for a gene, my doc believes 25% of population is susceptible. You can also test your home with an ERMI test kit. Environmental Relative Moldiness Index. Here is a link to check out, very informative:

 

www.survivingmold.com

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As Family said, a misdiagnosis is possible. Another possibility to be aware of, for those who might be sure lyme is involved, is that mold is holding you back from getting better or completely well. I don't think there would necessarily be any additional symptoms, or at least any you could distinguish between lyme versus mold.

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Thanks Familyof5, I may PM you for more info.

 

I brought 3 pieces of all wood furniture with me, hope it wasn't at my peril. I ditched all linens and pillows and beds.

 

The house I moved from tested as a 1 on ERMI yet, it had 3 toxic molds known to be immune depressors! :o Aspergillus, Cladosporidium, and another. only 3 spores of Stachys.

 

I was told not to make decisions on belongings unless Stachybotrys is involved. It's all so confusing, and it all so awful when a scared child is involved.

 

 

 

My new place had air sample and visual inspection by mold guy my LLMD recommended and has no water damage history. Let's hope we're ok.

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