New to Mold - What To Do??

[chootik]

HI Guys

So I'm sorta new to the Mold thing. Tested really high on the C4a test, in the 24,000 range and about 2 months ago my new doc did the HLA-DR Test and I only had positives in the Mold/Toxin area. Not in Lyme and not multi-susceptible. She said that's a good thing and started me on Cholestyramine.

Needless to say I have a lot of neuro issues, mostly really sensative nerves, lots of palpitations, hypoglacemia, low blood pressure and etc. I'm also really sensative to supplements and meds so I'm only doing Cholestyramine 1x day and have def. noticed a difference. I'm also trying to avoid anything that would cause me issues. Most likely will do the mold test Dr. Shoemaker recommends.

My question is:

1- How long do I have to do the Cholestryamine?
2- Do I also need to do Anti-Fungals?

I know I have issues with candida and doing some Homeopathic and Chinese remedies for that but very slowly as they make my palps worse!

Any information you guys can share would be much appreciated.

Chootik

 

[chootik]

Anyone??? I would appreciate any feedback... thks

 

[JanisB]

I tried to write a reply but see it didn't post, so if this is a duplicate, please forgive.
My doctor says (based upon her experience and Dr. Gray's) that it takes about 3-4 years to get rid of all the mycotoxins in the body, hence 3-4 years on CSM. She also recommends adding other binders in, such as charcoal, bentonite, zeolite, and chitosan.
Most important, and hardest for a newbie, is avoiding mold. It takes a long time, or at least it is taking me a very long time, to be able to tell a mildly moldy place from a non-moldy place. The more often you get hit with mold and mycotoxins and even fragements of fungal DNA, the more your system stays inflamed and slows the release of toxins. So be sure to keep away from any and every place that made you ill.

 

[chootik]

Thanks Janis!

I'm in the process of figuering out if my new place has mold!! I know my old apartment did but hope the new place doesn't. The problem is even if the new place has it, I just can't afford to move right now so what is one to do??

3-4 years on CSM!! Darn that's a long time but if that's what it takes then I guess we'll have to do it. I have noticed that CSM's effect is temporary. When I stop for a few days the neurotoxins seem to come back and the palps get worse. So either I have an infection that's causing more toxins or the mold toxins are not all gone yet. And since I've only been doing the CSM for 2 months, that can be the case.

So are you done with the mold or stil treating?

Thanks

 

[SickOfSickness]

If you can get to the mold, it can be cleaned, it is better to move but IMO most residences have some mold. Find more cleaning instructions in google, but in summary you spray with bleach and scrub. There are different types mold, some you don't want any exposure to, some you can clean. I don't know a lot about it.

 

[JanisB]

Most people make the mistake of bringing their possessions into the new space and, since they're sensitized to those toxins, end up reacting to the new place. By the time they figure this out and get rid of their old stuff, the new place no longer feels good. So Chootik, you could be reacting to your stuff, not the new place.
You can test your mycotoxin load thru RealTime labs in Carrollton TX.
You could have a chronic fungal infection. I do in my sinuses, My doc says most poeple with sinus issues have them.

 

[slayadragon]

Hi Chootik,

The problem with this disease is that people start reacting to very tiny amounts of toxins. And some toxins are much worse than others.

There are three basic ways that people can get exposed to toxins. 1) Present in their building. 2) Cross-contaminating their possessions. 3) Present in the outside air.

Very frequently, people get sick in buildings that have substantial amounts of quite problematic toxins (such as "black mold" -- Stachybotrys). These toxins contaminate their belongings and (depending on the particular toxins) can be impossible to wash off.

In some places, the outside air will have tiny amounts of really problematic toxins. It seems that for most people living in these areas, their detoxification system protects them from these really bad toxins. People who already sick have their defense systems compromised, and so they may be harmed by even small amounts of these toxins.

It is true that it is very difficult in many places to find a building that is free of toxic mold. For some people, getting really clear in terms of all mold exposures is not very practical.

What also seems impractical but may at least be doable is reducing the other two sources of exposure. Putting aside or disposing of possessions contaminated in a bad residence is painful, but people don't need many possessions to survive (while they do need some sort of roof over their head). And it's certainly possible to find a residence in a place where the outside air is good (though it might require moving to a different locale for some people).

As I just wrote on another thread, not all mold is created alike. Some is much worse than others. Thus, it may be that contaminated belongings or problematic air actually are much more damaging to people's health than living in a moderately moldy building. It all depends on the types of toxins involved.

Ideally, what you would do is go on a "mold sabbatical" -- getting to a good location for a couple of weeks and letting your body calm down. Then when you returned to your usual environment, you could see how much things were bothering you and make decisions based on that.

Obviously that's a difficult task to pull off though!

Perplexingly, Shoemaker has sometimes suggested to people that they will need to remain on cholestyramine for only a matter of weeks or months. That does not seem like nearly enough time for people whose illness has progressed to CFS, based on what I've seen.

I wouldn't suggest that people use anti-fungal drugs unless they have some overriding reason why they seem important. However, addressing fungal infections without drugs tends to be helpful in general. I would consider homemade yogurt/kefir, dietary changes and perhaps herbs.

Best, Lisa

 

[chootik]

Thanks everyone for the replies!

I guess I have to consider giving up my stuff from my old place, but I love my stuff!! The thing is I'm not even sure mold is my problem for sure! I had lyme before and it could be that Lyme is still bugging me or as Dr. B. and others have said a high C4a can be due to other infections such as Mycoplasma, EBV (which I test positive for) and others. Maybe mold is just part of the problem. Although my HLA-DR Test was positive for just the mold and toxin issues, not lyme.

Janis, I def. will look into the RealTime Labs test you mentioned. It would be good to know definitevely that my issues are mold!

Lisa in your opinion is there a sure way of finding out if mold is the problem? I think mold can be my problem but it might be part of the problem along with the other infections. Hard to know.

In the mean time, I'm continuing CSM and waiting to see the Doc in June. Waiting to get test results back on the Lyme Culture Test so at least we can rule that out. Then I might go to a camping trip for a week and see how I feel. Maybe that will tell me something.

Thanks again for all you guy's input.

 

[slayadragon]

The only sure way to know whether the "stuff" is a problem is to get away from all of it for a set period, to a really good place (in terms of "indoor" and "outdoor" air). There are lots of places that are safe experiments for camping, and a few places where the buildings seem like they would be safe enough to do an experiment as well. I tend to think that KOA cabins in a good location are a decent compromise --- I've never heard of the cabins as being bad (though sometimes KOA bathrooms are problematic), and they're an easier way to ease into camping than buying equipment and setting up a tent.

Have I sent you the collection of Erik's writings and some other materials? Looking at those might give you something to think about while you're waiting for your test results to come in.

If you get to the point where you're seriously thinking about pursuing this, please let me know and I will make sure you get the info you need. Conceivably I might even be organizing an avoidance retreat in the fall, so that could be a possibility too.

Best,

Lisa

lisapetrison at yahoo

 

[Forebearance]

I wish you all the best, chootik! You seem familiar -- were you over at ProHealth?

When I first got my HLA-DR test results, and found out that I had a haplotype that made my immune system have difficulty getting rid of mold toxins, I thought "Oh, this is a big clue."
It may not be definitive by itself, but it sure is a clue to what is going on with you.

I did the other blood tests that Dr. Shoemaker does to diagnose people, and it turned out that they fit the profile of someone who was being poisoned by mold toxins. He has some kind of yardstick that he uses, something like four out of seven results indicating mold poisoning = mold poisoning.

Forebearance

 

[chootik]

Hi Forebearance!

Yes I was on ProHealth.... still trying to get better after all these years.... ):

I think my new doc wants to run the Shoemaker tests at least a few more of them and I def. want to see if mold is my main issue or just part of the problem. How are you doing now? Are you still treating this or all better?

Lisa,

Luckily I'm in CA so I can go to the dessert sorta easily and see what happens. If you get a chance send me Erik's info. Would love to read about this stuff more. I've been reading up on your posts here and learning a lot, it's just so much info to absorb! Hopefully I can get to the bottom of this.

I know that a few years ago my then doc gave me something called TriGuard Plus. It's Grapefruit extract, Tea Tree Oil and Collidial Gold and he said it's really good for mold and it was some strong stuff and I could barely take it. So maybe that's another clue???

Please also keep me posted on the avoidance retreat. Sounds like a great idea. Would def. want to do it.
Chootik

 

[Forebearance]

I'm still trying to get better, too.

The way I explain the mold thing to non-CFS people is like this: I have an illness that messes up my immune system in such a way that it makes me really easy to poison. It just happens that I am genetically susceptible to mold toxins, so I get poisoned the most by them.

So it's a big part of the problem for many of us. But we could also be poisoned by other things, too. I think of it as like when AIDS patients get pneumonia: it's not the root of their illness, but they need to treat it if they want to feel better.

Good luck with your blood tests!
Forebearance

 

[slayadragon]

I'm continuing to work on the avoidance retreat, which (if we have it) will be during the first two weeks of September at a hot springs in the San Joaquim Valley about five hours north of L.A. This is absolutely the perfect place for it (having found it it is the only reason I'm considering pursuing this), but putting it together will require a massive amount of effort on my part and everything (including Erik's participation) needs to be in place for it to work.

There is a very limited amount of indoor lodgings available, so most people will be sleeping in tents. It also will be limited to a very select group of people (e.g. those committed to avoidance and willing to put aside all their possessions and shower/change before entering the property).

If this works out, it should be a really amazing event. I'm really excited about it, but only will do it if I'm sure it's going to work. So I will keep you informed!

Best, Lisa

 

[chootik]

Thanks Forebearance and Lisa

The retreat sounds like a lot of work but I guess it can be a mini experiment to see if avoidance works for a larger number of people. Putting aside belongings will be tough. I guess we have to buy some new clothes and stuff to take to the camp. Keep me posted.

Chootik

 

[slayadragon]

I personally don't have any doubts that avoidance will "work" (meaning be at least substantially helpful) for everyone with this disease if it's done right, based on what I've seen. It certainly will take a lot of planning to put it together though. Organizing the event to make sure that everyone has the clothing and equipment that they need will be part of the challenge!

 

[GoWest]

Lisa, are you seriously going to a hot springs to retreat from mold? Hot springs are by definition full of mold. You might want to go to Death Valley instead. Just curious, what else are you looking at in terms of recovery or treatment besides avoiding mold the rest of your life?
Paula Carnes

 

[sianrecovery]

Hi chootik

I tested multi suspectible on the HLA DR test, and believe mold exposure worsens my symptoms. however, I think they are part of a complex larger picture. I havent taken any meds to treat this yet.
Re cleaning mold - the mold expert I had look at my flat in the UK was emphatic not to use bleach to clean mold, saying it was at its most dangerous when dead or dying in terms of releasing spores - he suggested using hot water and detergent and washing it away then drying the area. That can only work for small areas obviously. Remediation is a whole other conversation.
I live in the UK - no chance of me getting a pristine environment - I am making do with 'good enough' and making improvements by what avoidance I can.

 

[GoWest]

Hey Lisa,
I am still waiting for a reply on this hot springs thing. I'm pretty good at telling if a place is contaminated. I used to get sick in the airport here in Vegas. It was found to be full of stachybotrus and had to be cleaned. I got high blood pressure at an eye clinic. Guess what? The receptionist happened to mention they had water damage in the building. I visited a hot springs in New Mexico - not a good experience due to mold all over the place, especially pond scum at the bottom of the pools even with arsenic in the water. I have been a patient of Dr. Shoemaker, so I am serious about mold stuff. Please tell me again that you feel good at a hot springs. Hey, if mold is the issue how can anyone feel good at places with tons of water and humidity?

Death Valley might work, but I wouldn't want to camp out there in August - about 120 degrees out there today. I don't handle heat well even without mold. Again, are you really going to a hot springs and do you really think avoiding mold is the fix for chronic fatigue syndrome - not that it doesn't help a little bit, but when you've got abnormal proteins in spinal fluid in both cfs and Lyme I don't think that can be pinned on toxic mold.

Paula Carnes

 

[Dufresne]

I too would like to know if the extreme avoidance retreat is a go, and if it's open to all. I'll be embarking on my own adventure in solitude and sand within the next couple months regardless, but a sort of intensive with experienced people would be invaluable, I'm sure.

 

[slayadragon]

Paula, my experiences with hot springs have been mixed. One hot springs resort (Sierra Hot Springs near Tahoe) was one of the worst places I've ever been. Other hot springs have felt great to me.

The closest hot springs to Las Vegas that I like are in Tecopa. I suggest Delights over the other facilities there. The Tecopa water felt really detoxifying to me and I felt great there in terms of my mold symptoms.

In general, I agree with Erik that locations that are pristine in terms of manmade chemicals tend to feel better to me with regard to mold/biotoxins. Sierra Hot Springs has been subjected to a lot of fire retardants over the years, for instance. Other hot springs, like Tecopa, are much more pristine.

I do tend to think that unless an area is especially pristine in terms of manmade chemicals, rustic hot springs (where water + organic matter sit in pools outside) may not be a good thing for us. I prefer "finished" hot springs (where the water is piped into manmade tubs), though of course there can be mold in the associated buildings if the owners aren't careful.

Which hot springs in New Mexico did you have a hard time with? I personally did not do particularly well at Ojo Caliente north of Santa Fe, though I'm not sure that the problem was specific to the hot springs. The whole Santa Fe/Taos area has felt problematic to me, each time I've been there in recent years.

I still think that a mold-free retreat conceivably could be a good idea, but I concluded that I was not the person to try to put one on. Maybe at some point, someone else will do one.

It's been almost five years since I moved out of my moldy house and started doing avoidance, and I've done a whole lot of different treatments during that time. Overall, I've become increasingly convinced that the core of the illness is the accumulation of toxins, and that to really get better it's necessary to figure out ways to get the toxins out. I've done a wide variety of things to facilitate that (sweating through various means, binders of various kinds, nutritional support, homeopathy, fasting, juicing, colonics/coffee enemas, etc. etc.) and have made a whole lot of progress, but I find it frustrating that "medical science" is not even considering the question of how to help people to detox. Considering how toxic the world today is, that seems of critical importance!

Best, Lisa