Ritchie Shoemaker Talks With Chris Kresser on Mold - for over 1 1/2 Hours!

[Lissa]

@Lissa, sorry I haven't been here much either. Sadly it has been almost 3 years since my exposure and I'm just now starting to feel like it isn't as much of an issue. I had to get rid of nearly everything that had been in the moldy house. The spores are so small, once you are so sensitive, even a tiny bit will create a crash. We sunned and cleaned and still many things just had to go. Even my clothes, many of them, had to go. People don't realize how life altering this is and how much it can affect someone.
Issie

Yes @Issie !! Life altering is an understatement even. My husband and I feel like refugees, having to leave our house (hopefully just for now, until it gets remediated properly), and start over from scratch. It's mind boggling.

It's not just the loss of possessions and household -- there is a whole 'nother level to it, in that - it's not like it burned in a fire and is gone, it's all just sitting there covered in toxins. No matter what you wish you could grab and save, it might make you sick again. There is no telling without trial and error, and how quickly we learn that so many things are just not worth the risk.

Finding an apartment and moving out has helped in the immediate short term - yay. But we continue to have flares, and are having to figure out what is causing it. Spending every waking moment in damage control mode. The list of things to aquire, replace, and take care of is endless. We have not had a moment of rest in almost 3 weeks now.

I'm running purely on adrenaline, and having to take on more because now my husband is compromised too. Luckily for him it is mostly cognitive stuff, and he's still able to work. But -- we make a crazy team when paired up and trying to accomplish all that needs to get done. It takes HOURS longer because we are so scatter-brained, ADD, and moody -- not to mention that former logistical prowess (for both if us) has gone out the window! It's like herding cats to get ready to go somewhere.

 

[Lissa]

Oh my golly gosh, Lissa. This could be massive for you. Which I hope is some kind of warm comfort for you sleeping in your art studio!

Is the test you did the same as the one on vcstest.com? I did that back in 2014 and it suggested that yes, I do have some kind of biotoxin issue going on. But then didn't do anything more.

Keep us informed, and I hope you find some alternative accom really soon.

Thanks @Sue Stevenson ! The VC test was the one by Shoemaker, but I did it at the mold doctor's office, not online. My husband just had his appointment, and he scored very similar --- basically a fail on a scale that indicates we are both significantly compromised.

What is interesting is that for years I have complained of feeling like I can't see in the dark, and that low light is terrible - can't read etc. Certain computer or phone screens being really difficult. I hadn't a clue there was such a thing as "visual contrast" testing. And now it makes perfect sense to explain so many of my vision problems!

Just the other night we were in the car trying to map a new way back to our apartment rental --- and the map background was light green, and the roads were off white/greyish. I seriously could not make out the roads!!! It was like a blank map. SO crazy that a biotoxin can mess up your brain so much! If only we'd known any of this information 6 years ago!

 

[Lissa]

A quick (yeah right...) general update in this Mold Saga....

Felt better from sleeping in the studio for a week, but we were still getting exposed every time we had to go in the house for use of facilities, cooking etc. Within a few days, the studio seemed slightly affected, as there was no way to eliminate spore cross-contamination -- we were just having to go back and forth too much, and yes, it DID matter what we touched or brought with us. UGH.

My husband detoxed our computers, while wearing a hazmat suit etc -- but we think even that may not have been enough. He feels off every time he fires his back up and uses it for a while. I have been afraid to turn mine back on. Its just another thing in the long list of crazymaking issues to contend with.

Found an apartment last week and were able to move in. Had to buy a new mattress, all new sheets and pillows etc. Sleeping on the floor, and using some of our outdoor furniture for the short term solution. Had to take the cats to the vet for baths and check-ups, before transporting them to the new place. Thankfully they seem healthy enough and are doing well, despite the trauma of baths and being yanked into a new environment.

Spent the entire weekend shopping for all kinds of stuff, clothes, towels, etc. so we can start fresh here. Also had to get my husband's truck detailed -- that was making us sicker too. Picked up another air purifier - so we have two running at the new place. Trying to suck up anything that came with us so that this place doesn't get contaminated either.

Thankful we had an emergency fund as recommended by so many -- even then, we are freaking out as the remediation costs have yet to be determined... contingent on the inspection test results. Gulp. But in the big picture --- our house will never be able to be sold unless it's fixed, and we love our property. We've spent the last 6 years putting our hearts and souls into it. We can't imagine giving up on it, nor can we afford such a loss -- financially or emotionally!

Started the CSM on Sunday -- on day 4 of it, at a half dose, only twice a day for this first week. It smells nasty, is super gritty, and the texture makes it hard to get down. BUT -- that said, it's way easier than the Elemental Diet was -- hahahahahaa!

On the bright side - even though I am exhausted, I am finding that since we moved out of the house, I've been able to do way more in a day than I have done in ages. Not leaps and bounds by any means, but I have to say that it is an improvement even before starting the medicine.

HINDSIGHT... I wish I hadn't thought that you'd have to see and smell mold to have a real problem. We had stachybotrus (sp?) "toxic black mold" - completely hidden behind a baseboard under the toilet in the master bathroom. Slowly poisoning us with toxins and we hadn't a clue. Only discovered because we decided to do a remodel -- we hated the tile and the vanity cabinet in that room, and were finally getting around to changing it.

OK - must rest before the next go round of "get dones". More to come in future updates...

 

[Hip]

Dr. Shoemaker has cured so many people with regular mold or algae poisoning, or CIRS, as he calls it. It just feels like there must be something else going on in us, in addition to the poisoning. Because I don't know anyone who has been completey cured of ME/CFS by his protocol. I only know of people who have been helped, or have improved somewhat.

Maybe the difference could be because we had a virus involved in the beginning of our illness, while the regular mold poisoning patients didn't. Does that ring true for anyone? So I like his theory, but his treatment protocol doesn't quite do the job for me and others I know with ME/CFS.

I think that's a good theory: there could well be two subsets: pure mold patients whose only problem is mold; and virus + mold patients, who perhaps caught their ME/CFS-triggering virus while being exposed to mold, such that the mold compromised immunity and thereby allowed the virus to trigger ME/CFS.

Mycotoxins can either have immunostimulatory or immunosuppressive effects, depending on the mycotoxin (ref: here). So the immune system may be thrown into a surpressed or abnormal state during mold exposure, which then may allow a normally relatively benign virus to trigger ME/CFS.

Dr John Chia discovered a similar phenomenon with corticosteroids (which are immunosuppressive): Chia found that corticosteroids, when inadvertently given during an acute viral infection, seems to be a recipe for triggering ME/CFS. Ref: here.

So there may be a general causal equation of:

Acute infection + immunosuppressive agent = ME/CFS


Once your ME/CFS is triggered by a virus, then perhaps even if you remove the immunosuppressive agent (corticosteroids or mold toxins), that may not help much, because if for example ME/CFS involves autoimmunity, once autoimmunity is triggered, it is not easily reversed.

However, in the case of pure mold patients, without any viral connection, it seems more likely that removal of the offending mold and mycotoxins may lead to full remission.

In Dr Joseph Brewer's 2013 paper, points out that the ochratoxin A(a mycotoxin) that he found in 83% of ME/CFS patients is a mitochondrial poison, so just only its own could conceivably cause an ME/CFS-like condition of mitochondrial dysfunction.

Thus pure mold patients may have mitochondrial dysfunction directly caused by the mycotoxin; whereas mold + virus ME/CFS patients may have a different etiology to their disease, such as autoimmunity,

 

[Forebearance]

I like your thoughts, @Hip!

I would just want to add that it is possible for ME/CFS patients to feel significantly better if they remove themselves from mold toxins to an extreme degree. Following Erik Johnson's extreme mold avoiance lifestyle has done this for many people.

But it is a hard lifestyle to do. It may be that simply moving or having one's house remediated and getting new stuff could help, or at least prevent an ME/CFS patient from getting worse.

I tried following a moderate approach to getting away from mold toxins, but I ended up getting another bad mold exposure and I had to go more extreme than I had planned. In the end, I had to follow the dictates of my immune system.

I really appreciate Dr. Nathan and his book. He seems to be able to take the discoveries of other doctors and apply them to his patients in a personalized way. I hope that all of the patients on this thread who are trying Dr. Shoemaker's protocol will have good results from it!

 

[Lissa]

Today's Update of the Mold Saga...

It's been six weeks since we found the toxic black mold during our remodel. Everything came to a grinding halt -- everything in the house is pretty much how we left it mid-chaos. (Think Pompeii... hah!) We've been living in an apartment in the next town over for almost a month already. (Turns out the apartment had rooms that tested high for mold too.... arghhh! So we've had to set up air purifiers and hepa-vac there, on top of everything else we have on our plate.)

My husband and I are just starting our fourth week of CSM --- but this will be the first week getting the full dose at 4 times a day. It's been driving me nuts, as it seems to give me hot flashes about 20 minutes after each dose. These cycle every 1/2 hour or so, sometimes alternating with the chills. Then it's time for another dose, and it starts all over again. Just for fun it also seems to be causing night sweats too. I wake up drenched several times a night. UGH.

We've gotten our test results back on the house, and on ourselves. Turns out, yes, the toxic mold IS stachybotrus. And it is in the master bath at very high levels since it got released into the air when the baseboard came off. It is also in the laundry room, and our laundry machines will have to be replaced. (Along with most, if not all, of our belongings.) The rest of the house is infested with asperilligus/penicillium..... among other various types, which means -- more fun times. Overall the house gets an ERMI score in the yellow zone --- could be worse, but sure isn't good. We were spot on when we felt the house was affecting us and had to get out.

We've also had to replace our computers --- still are not caught up yet on that side of things. It's insanely complex when trying to start from scratch again. I've fallen so far behind online -- totally out of the loop with everyone and everything. It has really been an overwhelming journey.

May be having to replace my husband's truck too -- we both feel sick after riding in it, despite having it professionally cleaned a couple weeks ago. Not to mention, the house is so toxic, that neither of us can go in -- regardless of being fully suited up in hazmat gear, complete with white tyvec suit, gloves, goggles, and respirator masks. We tried to grab some more necessities yesterday and today we are both compromised again. Just from that brief exposure, and despite using the appropriate protective gear, and cleaning/decontamination procedures.

As for my own test results --- the oddest thing! I tested "positive" for neurotoxicity on the visual contrast test, but the blood tests (etc.) revealed that I do NOT have CIRS, or MarCons. So because of the mold exposure, I am affected and need to detox, but there is still something else going on. It's like out of the whole Shoemaker "pyramid", only the first 2 lower layers apply for me. Getting out of the toxic habitat, and detoxing. The fuzzy part is that I still have high lymphocytes, and high T helper cells -- CD4 I think it was? (I'd have to look it up again -- and who knows where that data is in all this chaos?!)

On the bright side - overall I have seen some improvements since we moved out. My Vivofit shows that I have pushed my daily average steps from 4,000 to around 6,000. With a few days topping out over 10,000. And just think on that -- ALL of these steps have reflected six full weeks of chaos management and disaster control. This is the first weekend in SIX WEEKS that my husband and I have had a chance to slow down and relax for a couple hours. Meaning we weren't having to handle something related to mold, mold research, environmental tests, health management, remediation planning, vehicle rehabilitation, replacing things, spending hours and $$ at the laundromat, and just plain re-creating our lives from scratch. I can only imagine how good it will be when we DON'T have all this on our plates and maybe we can do a short hike instead!

Oh and did I mention Vermont got that blizzard? While we are paying rent on an apartment, we had to go to the house we are paying a mortgage on, that we can't live in, and dig it out from three feet of snow. The ONE winter we finally get slammed, yup. Insult to injury.... YEEEAAAAHHHHHHH!!!!!

 

[Issie]

Sadly, for me, I'm now so sensitive to anything mold related - makes it very difficult. I can sense it and smell it within a few minutes. I recently had to stay in a hotel room and it was in the bathroom. I had to dose up extra on my MCAS med. I didnt spend any amount of time in the bathroom and we kept the door closed. Any old musty books - will set me off. You have to look at it as a blessing - I guess. The Canary in the coal mine. My husband doesn't question me if I sense something. I'm usually right on. We have changed hotels before when it's been an issue.
I did better using Takesumi coconut charcoal than the medicine. Also used D Earth and soooo many different cleanses. I find colidal. silver sprayed in nose to be very helpful. Was using it with xclear. But they changed the source of the xilitol anD I don't tolerate that brand now. It will kill bacteria and along with silver helps MARCONS.
I had to nearly get rid of anything I had in my parents house (where my mold exposure happened). I had brought them home to my house and then we realized the problem. So we had to get rid of things that those things contaminated. We did massive cleaning.
Something else you may want to look into - there is a mold/fungus that can cause tumors. I test positive for it in my thyroid tumor biopsy. I had this before this exposure. But this exposure triggered growth.
Issie

 

[Forebearance]

@Lissa, did your doctor tell you that CSM soaks up everything that is fat-related, like fat-based vitamins and hormones (which are fat based) ? It sounds like it might be soaking up too much of your estrogen, giving you menopause type symtpoms. I've heard people say they take extra vitamin A, D, E, etc. And it helps to eat extra healthy fats like nuts, avocados, coconut, organic butter. For me seemed to soak up a lot of calcium and other minerals.

Also, I want to suggest that it is wise at the stage you're in to buy as few new items as you can. I wouldn't buy any expensive furniture if I were you, just to be on the safe side. I learned that the hard way.

 

[Lissa]

Sadly, for me, I'm now so sensitive to anything mold related - makes it very difficult. I can sense it and smell it within a few minutes. I recently had to stay in a hotel room and it was in the bathroom. I had to dose up extra on my MCAS med. I didnt spend any amount of time in the bathroom and we kept the door closed. Any old musty books - will set me off. You have to look at it as a blessing - I guess. The Canary in the coal mine. My husband doesn't question me if I sense something. I'm usually right on. We have changed hotels before when it's been an issue.
I did better using Takesumi coconut charcoal than the medicine. Also used D Earth and soooo many different cleanses. I find colidal. silver sprayed in nose to be very helpful. Was using it with xclear. But they changed the source of the xilitol anD I don't tolerate that brand now. It will kill bacteria and along with silver helps MARCONS.
I had to nearly get rid of anything I had in my parents house (where my mold exposure happened). I had brought them home to my house and then we realized the problem. So we had to get rid of things that those things contaminated. We did massive cleaning.
Something else you may want to look into - there is a mold/fungus that can cause tumors. I test positive for it in my thyroid tumor biopsy. I had this before this exposure. But this exposure triggered growth.
Issie

Thanks for the input @Issie -- yes, my husband has become extremely sensitive now to all things mold. In fact he's more so than I am at this point. Different things seem to trigger us so perhaps between us we have it covered! Hah! Unfortunately - what might explain it is that he got his genetic results back and he has the "dreaded" gene combo. The crazy part is that he has that, and was on the spiral path downward with mystery liver issues going on, as well as low platelets, and high iron...yet still healthy enough to have been working all this time. But I do NOT have the dreaded genes but I'm the one with ME/CFS and on disability. Go figure. (Although I did come up with mold susceptible and Chronic Lyme susceptible..)

 

[Lissa]

@Lissa, did your doctor tell you that CSM soaks up everything that is fat-related, like fat-based vitamins and hormones (which are fat based) ? It sounds like it might be soaking up too much of your estrogen, giving you menopause type symtpoms. I've heard people say they take extra vitamin A, D, E, etc. And it helps to eat extra healthy fats like nuts, avocados, coconut, organic butter. For me seemed to soak up a lot of calcium and other minerals.

Also, I want to suggest that it is wise at the stage you're in to buy as few new items as you can. I wouldn't buy any expensive furniture if I were you, just to be on the safe side. I learned that the hard way.

Thanks @Forebearance -- I did know that the CSM works with the fats to draw out toxins. Wasn't aware that it was linked to soaking up hormones too. Yikes! I have been taking the Nordic EPA and DHA in super high doses, plus doing coconut oil, and LOTS of nuts too, even avocados several times a week. I have been doing most of my regular supplements which include A & D amongst lots of other things. (Hopefully all this would combat the extra losses of minerals and hormones?)

I did stop taking my high doses of individual B's which were part of the methylation/genetic protocol I had started. It just seemed like crazy numbers of pills on top of all else I'm doing. Not to mention the timing of it all is near impossible when doing CSM and SR-T3. Take this without that, before that but not then, 2 hours after, but not at bedtime, with food, but not with others, yada yaaa.... blink blink.

OH - and I just started taking Epsom detox baths -- I am a fan. I think it is helping.

Ah yes -- thanks too for the advice on replacement strategy -- we are bare bones at this apartment with just a (new) mattress and some patio furniture (table and 2 chairs) that had never been in the house. And we have 2 air purifiers running non-stop, just in case. Our heads are spinning over all that needs to be decided on. UGH.

I am making a spreadsheet (it's just the way my mind works) and using photographs we took before we left. I have a tab for each room, and then I am listing every item in the room, using columns to determine whether it's a keep: yes/no/maybe. My theory is that later I can filter the list and make it easier to give someone instructions. Like - here --- go to the laundry and throw out everything on this list.

It is truly overwhelming, but I feel like it is easier to make those decisions long distance, instead of holding an object in my hand, letting emotions get in the way. Even then, emotions are cropping up and making it difficult to decide. I think my husband and I will do a final run through of the list to make sure we are on the same page with everything, before moving forward. Then we have to find some healthy sucker (aka friend...) to go in the house (tyvec suit and all...) and start the process -- so maybe we can save some money instead of paying costly remediators to take care of the easy saves, less important, or non-salvagable stuff.

 

[Forebearance]

I like your plan, @Lissa ! It sounds like you are doing a great job.
I like those baths, too. I hear you on the challenges of scheduling everything with csm.
Best wishes on sorting your household long distance!
I did end up with a couple storage units full of sentimental items. Now, nine years later, I think I am ready to go get rid of some more of the furniture and condense the stuff down to one unit.

 

[Issie]

Thanks for the input @Issie -- yes, my husband has become extremely sensitive now to all things mold. In fact he's more so than I am at this point. Different things seem to trigger us so perhaps between us we have it covered! Hah! Unfortunately - what might explain it is that he got his genetic results back and he has the "dreaded" gene combo. The crazy part is that he has that, and was on the spiral path downward with mystery liver issues going on, as well as low platelets, and high iron...yet still healthy enough to have been working all this time. But I do NOT have the dreaded genes but I'm the one with ME/CFS and on disability. Go figure. (Although I did come up with mold susceptible and Chronic Lyme susceptible..)

Which genes are you talking about? Does he have hemochromatosis? I'm a carrier on one leg.
We simplified and just let things go. I was able to clean and salvage a few things. But it was hard to let sentimental things go so close to having lost both parents after long hard caregiving. But at that point I was so sick - living was more important to things. I didn't know if I would recover. Sent me backwards big time. But I'm doing pretty well now. It's all relative and perception. Surprising how few things we truly "need" to live. Happiness doesn't come from possessions. But having a measure of health does contribute to happiness. Trying to have a positive attitude in the middle of trauma.....very important.
Issie

 

[Lissa]

He has the HLA-DR3 & DR4 -- Shoemaker is the one calling them "dreaded", because this combo makes it very hard to detox. Apparently only 3% of the population has it. I fall in the 25% that are mold susceptible, and my HLA combo shows me to be Lyme susceptible as well. Which seems to be spot on, as I got Lyme in 2013, three years after being officially diagnosed with ME/CFS. He does NOT have hemochromatosis...been checked several times. Still no real answer as to why the high iron counts.

So sorry to hear about the losses in conjunction with the loss of your parents - that must have been incredibly difficult. Indeed this whole experience is quite traumatic. We are two months in and still trying to figure everything out in relation to solving the biggest problems with our health, and secondarily with the house itself. SUCH a process. The possessions seem to have really taken a backseat already. Although I'm sure it will be much harder to part with things if I have them in my hands. I will try to remind myself that it isn't worth the risk for the most part. Hard but necessary. WOW. Such a life lesson.

YES -- positive attitude to combat trauma -- spot on @Issie ! Doing our best to roll with everything. In fact I told my husband yesterday that we need to be able to drop some of the (rightful) anger at the injustice of our situation. We don't need to be feeling that way about the house itself, it's the people who built it who messed it up. What we need is to look to the future when it is put back together, and feeling pristine again, when we can go about "making it our own" once more. I decided we should pretend we just bought the place and are fixing it up "just so". (Well in essence we did... we are having to refinance in order to pay for the full extent of the remediation. Now we'll be 80-something by the time we pay it off... awesome. Whoops getting angry again!) Anyway -- a positive spin feels so much better when we make trips over to the property, even though we can't go in the house. Mind games are wondrous things sometimes!

 

[Issie]

@Lissa, you may like this.
www.healthrising.org/forums/threads/perception.2119/
Here's a copy of my post. Wrote it after some of the trauma, mold exposure and partial recovery.......
"A sucess story is all in the definition that the person themself determines. I feel I’m a sucess story – but I’m not 100%. If I ask my husband what percentage he would say my recovery and dysfunction is – he says I’m still on a lower level than what I feel is true for me. I know where I’ve been and know where I am. So I feel my improvement is a lot higher than someone who observes me may. It’s all a perception based on our own understandings and how WE SEE THINGS. It’s based on LIFE in OUR world. Not life in someone else’s world. If we perceive ourselves as better and our minds accept that as a fact for us – then we can be more at peace with where we are in our own world, our life and our perception of what is true for us.

None of us will probably ever be what we May consider 100%. But we have to be thankful for the improvements we get and accept a certain level of dysfunction from imperfect bodies. It's learning how to be ok with what we get and LIVING our lives the best we can with whatever that may be. I've watched some very disabled people LIVE life with much happiness and peace of mind. Some things can't be changed. But we can come to peace in our minds and that improves our quality. We can't base it off someone else's abilities and long for their function. We base it off our abilities and our perception of our function. Not that we accept the dysfunction - but coming to terms with it gives peace. And surprisingly that actually improves our function. It's not a mental problem, but that is definitely affected. Mind, Body medicine does make a difference. Science can actually prove it.

That's one reason why I don't think we can say our percentage of function. If we put ourselves low - we will live up to it. If we put ourselves as high - we may push to hard to live up to it. I don't want to fix to low a percentage as a thought in my mind. Or be disappointed if I can't live up to my desired higher percentage.

One of my favorite quotes is by Anias Nin:

"We dont see things as THEY are,
We see them as WE are."


Issie"

 

[Issie]

I want to add that the problem I had with Dr. Shoemaker's treatment protocol was that I couldn't get it to work for a person who is super sensitive to medications.
I couldn't tolerate the CSM (and I doubt I would have tolerated Welchol, either). So I got stuck on the first step of his protocol, trying to get the toxins out of me with gentler binders. I spent years on this one step.

But then Dr. Brewer's protocol came along, and it is flexible enough to modify for super sensitive people. I could get it to a low enough dose for me, and it still worked! And it continues to work, so it is really encouraging.

The CSM - by Shoemaker own words - makes those with Lyme sicker. I only tolerated it 3 weeks and cycled off. Then did other cleanses and back on for 3 weeks again. I found my other cleanses better tolerated. I used a lot of D Earth and Takesumi Coconut Charcoal. Lots of Supreme Nutrition herbs rotated. Stevia in most drinks. And herbs for protozoa and at times Doxycycoline. It has been 3 years. I'm better but not sure if I'm still not having some issues with it. I had one guy tell me once you are sensitive even very small offenses will set you off. Seems to prove true.
Issie