Toxic mold & xmrv poll

[lono]

lostinthedesert

1. What have your melanocyte stimulating hormone (MSH) and vasoactive intestinal peptide (VIP) readings been like over time? I'm interested in having people talk about that on this board b/c I think we'll find that a fair number of us have high C4a, high TGF-Beta 1 and low VIP and MSH.

2. One other thing re: cholestyramine (CSM). Unfortunately no one has ever done any research to determine what it's binding and expelling from the body. It most certainly could be toxins, but my understanding (and someone please correct me if I'm wrong) is that CSM and similar meds like Welchol could be binding and removing inflammatory byproducts from our bodies. This seems plausible to me. People with these abnormal biomarkers are "caught" in a chronic inflammatory state and something that removed some of the inflammotary byproducts in our bodies could theoretically help.

Like I said, we actually know what exactly CSM and Welchol do, but it is very clear that they help a number of people.

 

[slayadragon]

Lost, it's really interesting to hear your experiences.

Obviously you were really, really sick. That seems (as far as I have seen so far) to translate into huge reactivity after people finally do pursue avoidance. It can be a really long, hard road.

Where (and when) do you get slammed by mold outside? Do you have any thoughts on where it was coming from or why it affected you so severely?

Did you have different symptoms from your outdoor exposure than you have from indoor ones?

I made a lot of progress during the first year, even though I was only living in a "moderately" okay place and not able to take any CSM at all. Erik (and others) seemed to make some progress in detoxing without the csm too. It seems to come out through other channels (sweat, breath, vomiting, even saliva) rather than bowel though.

I think the CSM is really important too.

The questions that you're asking are precisely the ones that are puzzling me (and that I think are key to solving CFS in general).

It's clear that my body is saturated with toxins of all sorts. Some of that is related to exposures and some to genotypes.

But the extent to which this stuff is painful as it comes out makes me feel there's more to it than that. The idea that my detox mechanisms are broken (though I'm not sure in what way) rather than just deficient makes sense to me. Maybe due to a pathogen. I wonder if that's what the stem cells are resetting.

And I think you're right that there's a poison factory inside my body. Lyme continues to be an issue. And getting herpes viruses more under control (with Valcyte/Famvir) has made a surprising difference with my reactivity.

On one hand, it's amazing how much progress I've made. But on the other, it's discouraging that there continues to be something WRONG and that I'm not sure what it is. It would be good if someone were able to figure it out.

Sometime if you have time, it would be interesting to hear more about your story.

Best, Lisa

 

[slayadragon]

One other thing re: cholestyramine (CSM). Unfortunately no one has ever done any research to determine what it's binding and expelling from the body. It most certainly could be toxins, but my understanding (and someone please correct me if I'm wrong) is that CSM and similar meds like Welchol could be binding and removing inflammatory byproducts from our bodies. This seems plausible to me. People with these abnormal biomarkers are "caught" in a chronic inflammatory state and something that removed some of the inflammotary byproducts in our bodies could theoretically help.

Like I said, we actually know what exactly CSM and Welchol do, but it is very clear that they help a number of people.

I'm of the impression that CSM is supposed to clear a variety of toxins from the body, not just biotoxins. The idea that it clears inflammatory products is interesting. Do you recall where you heard this, if you did hear it from somewhere else?

I don't think that CSM binds mercury though. The substances that I know bind mercury (ALA, chelation, brown seaweed) still give me big detox reactions. The CSM is much less so at this point, and also somewhat different ones.

Best, Lisa

 

[lono]

I'm of the impression that CSM is supposed to clear a variety of toxins from the body, not just biotoxins. The idea that it clears inflammatory products is interesting. Do you recall where you heard this, if you did hear it from somewhere else?

I don't think that CSM binds mercury though. The substances that I know bind mercury (ALA, chelation, brown seaweed) still give me big detox reactions. The CSM is much less so at this point, and also somewhat different ones.

Best, Lisa

Here's a doctor talking about the possibility that CSM and Welchol bind/clear inflammatory markers from the body -

"Welchol, Questran and neurotoxins?"
http://lymemd.blogspot.com/2008/12/welchol-questran-and-neurotoxins.html

 

[jenbooks]

Continued CSM plus MRCONS treatment led me to be relatively independent by a year out. Detox symptoms continued (and continue) but not at the "heroin withdrawal" level of the beginning. Constipation was handled by any means necessary. And yes all possessions were chucked and that home was long gone. My labs initially did not improve at all except for my nasal culture, though my vision did. It took almost a year for my C4a to notch down a bit while I was living outdoors and getting a lot more energy.

I got slammed shortly after that by an outdoor exposure that set me back at least 3/4 of the way including highest spike of C4a and MMP9 I have had. This happened despite being on 3 scoops CSM/DAY throughout (this was a reduced dose for me). I believe that being on CSM at that point saved me even though I am much worse and still trying to recover from that last hit two and a half years later. Being on my own, that last bad exposure really put my survival out on the edge. I am lucky to be able to tolerate CSM...

Is CSM the only detox treatment I have used? No but I have found it to be among the simplest and most effective. Do I do other types of treatments? Yes, but most of the ones that I have found to be worthwhile are too expensive. Yup, CSM is a gut-bomb (upper and lower) but I do advocate it for those who can make it work for themselves. It is certainly worth a try. I wish there was something easier to take but I am glad I have it (in case you could not tell ).

Peace,
S

But even with CSM, is it still true that a whiff of citrus makes you sick for days? Or herbs triple bagged in baggies make you sick as well? Because that is really a severe reactor, if that's the case, it seems there might be more avenues than CSM. If those are your reactions with CSM, what are the reactions without CSM?

I am curious about the outdoor exposure--that set you back almost to not surviving. Was it pollution? Or mold? A crop dusting or pesticide exposure out of the blue? Were you unaware of it when it first happened--and couldn't get away fast enough?

 

[George]

Boing, boing, wag, wag

Jenbrooks, jenbrooks, wag, wag, wag, wag, sluuuuuuuuuuuuuurrrrrrrrrrrrppppppp!

It's you, it's really, really, really you!

kiss, kiss, slurp, slurp

We now return you to your regular thread programing.

 

[Forebearance]

Hey, Ecoclimber, I will respond to your poll as soon as I get my XMRV results back.
I too wonder why it seems like we people with CFS are full of so many toxins and have to go through painful detox for years and years.

When it comes to testing, I thought the genetic test was important. Knowing my HLA-DR haplotype was a really big hint that mold toxins were an issue for me. I remember it costing around $100.

Forebearance

 

[*GG*]

I'm of the impression that CSM is supposed to clear a variety of toxins from the body, not just biotoxins. The idea that it clears inflammatory products is interesting. Do you recall where you heard this, if you did hear it from somewhere else?

I don't think that CSM binds mercury though. The substances that I know bind mercury (ALA, chelation, brown seaweed) still give me big detox reactions. The CSM is much less so at this point, and also somewhat different ones.

Best, Lisa

I took CSM for at least 3 months, I had a 3 month supply of it, but could not always do the recommended amount every day, because of time constraints and/or work. I took the CSM with Chlorella and I know that my mercury levels decreased because I did another DMSA challenge test about 1 year after the detox. My Dr who prescribed the CSM had me do the visualization test for detox, but I was uncertain how accurate that was, so with flare up of my symptoms last fall, I decided to have my levels checked again and they were not elevated.

I had 4 silver amalgams removed last December, they were cracking, and I had them replaced with white fillings that do no have mercury in them. I have 2 more amalsgams that I would like removed this year, as my budget allows. I took high doses of Vitamin C for a few weeks after having my mercury amalgams removed on the advice of my Dr. Not sure how good the dentist was at making sure I did not ingest any of the fillings, but I did not get any sicker than I am.

 

[lono]

I took CSM for at least 3 months, I had a 3 month supply of it, but could not always do the recommended amount every day, because of time constraints and/or work. I took the CSM with Chlorella and I know that my mercury levels decreased because I did another DMSA challenge test about 1 year after the detox. My Dr who prescribed the CSM had me do the visualization test for detox, but I was uncertain how accurate that was, so with flare up of my symptoms last fall, I decided to have my levels checked again and they were not elevated.

I had 4 silver amalgams removed last December, they were cracking, and I had them replaced with white fillings that do no have mercury in them. I have 2 more amalsgams that I would like removed this year, as my budget allows. I took high doses of Vitamin C for a few weeks after having my mercury amalgams removed on the advice of my Dr. Not sure how good the dentist was at making sure I did not ingest any of the fillings, but I did not get any sicker than I am.

Did you have any of the recommended lab done: melanocyte stimulating hormone (MSH), vasoactive intestinal peptide (VIP), C4a, TGF-Beta-1? Were these abnormal?

 

[*GG*]

Did you have any of the recommended lab done: melanocyte stimulating hormone (MSH), vasoactive intestinal peptide (VIP), C4a, TGF-Beta-1? Were these abnormal?

Not sure, I would have to find and dig thru some paperwork. Are you looking for something in particular?

 

[lostinthedesert]

A bunch of Stuff

My MSH has been below measurement threshould every time except once when it was 1 tick above and maybe one other time when the sample was sent to an non-trusted lab and it was 2 ticks above the lowest.- I dont recall the limits for sure but I think the lowest they give is 8. VIP was also not measurable for a long time and then bumped up a timy bit. ADH was very low and dysregulated until it just became unstable and dysregulated and I blew up for a while.

As far as CSM and mycotoxins. There is testtube evidence that CSM binds at least certain mycotoxins very well but ther are so many of them and only a few have been tested. The animal study where CSM increased short term survival against ciguatoxin challenge also says something to me. The other piece of evidence comes from my conversations with Dr. Michael Gray. He told me that he has observed mycotoxin levels go up in patients urine after about two weeks off of sequestrants. I will try to ask him how many times he has observed this as I do not have that information. Now Dr Gray recomments a combination of CSM, charcoal and bentonite that some of his patients call The Slurry. Some do take this but others I know pick and choose what they feel they can handle and what works for them.

As far as my MCS like reactivity goes, nothing has ever really helped except very strict avoidance of anything that causes more than the most mild reactions. CSM and other treatments have helped my neuro symptoms like tremors, spasm, headaches, vertigo, auditory hallucinations, stabbing and shooting aches and pains, itching, twitching etc. Some thins helped my energy but nothing has touched my MCS at all in years except avoidance. I did the Zeim-Pall sort of treatment for a long time, what I could tolerate of it and made zero progress except for having *worse* airway reactions. A waste of hope, time and money for me. I did not live miles form human habitation for nothing.

The citrus thing is a pain for me. I actually have a worse (but somewhat different) reaction to fresh citrus than I do to raw gas fumes - less brain fog than with gas but much worse headache and pain. I had to throw out a bunch of things that had been exposed to fresh citrus. Since about 2006 I have had increased bad reactions to aromatic foods and many spices. It limits my diet quite a lot and is an additional barrier to being around people. Like many of these things, it is just something that I am stuck with that many folks do not understand.

As far as my outdoor exposure. I believe it was mold. I have also had other more minor outdoor mold exposures that have hurt me but not as badly. But those happened in less inhabited areas. The situation around here is that some areas are good but it is easy to stumble into trouble especially when I did not know my way around and was looking for a home or sometimes a hidden place to camp. With the intensity and shifting of winds it is possible to get downwind of some nasty stuff.

I have several times experienced sudden vomiting and onset of symptoms. Also experienced tongue and skin burning and skin eruptions. There are many old houses in poor areas with obviously poorly patched roofs, just hunks of tin flapping in the wind. There are abandoned areas around the old mining towns. There are a lot of newer houses that have been left partially completed due to the economy. I have seen one that was totally engulfed in mold and others pockmarked when I was following an agent looking for a house or land. There are neighborhoods of trailers that are forclosed, abandoned and partially gutted. These trailers and partially built houses are full of the processed wood products that stachy loves. Those real estate listings all carry mold disclaimers.

In certain neighborhoods in the cities there are also a lot of cheap houses that were rentals that have been left empty by the exodus of illegals since the time of the employer sanctions law. At least when they were occupied, there was someone to put a bucket under the leaks. lots of people don't fix leaks here as a lot of the year is dry and when it rains, it rains so hard that rain forces its way in anyway. the valleys and drainage areas that are not inhabited harbor other kinds of mold but it can still be bad so I have learned to avoid those too.

Must go for now. I am twitched out. Love to all.
S

 

[lono]

Vasoactive intestinal peptide and MCS

lostinthedesert - Every person I've ever heard from who has multiple chemical sensitivity (MCS) also has low vasoactive intestinal peptide (VIP). Sounds like you're in that camp. I wish some of the MCS doctors who look into this.

 

[slayadragon]

That's all really interesting, Lost.

A patient who just saw Dr. Gray a couple of weeks ago said that he now is recommending zeolite. I don't know if he's had success with it. Here's an article that says that it doesn't work for DON (a trichothecene present primarily in food):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799631/?tool=pubmed

What I think is that since it's supposed to bind other toxins (e.g. heavy metals), this might help to reduce the total body burden of toxins and thus decrease reactivity in general. This would be consistent with Dr. Guyer's statements that addressing any pathogens or any toxins, doesn't matter which ones, helps with the mold reactivity. Based on my own experiences, I tend to agree with that.

It's really hard to get reactivity to go down, and even a short time in a really bad place can make it go up. Erik's didn't go down for years, but now (after 12 years of extreme avoidance) it's much lower than it used to be. So it is possible to make progress even without doing anything at all other than "natural" detox (e.g. in the wilderness).

That's why I was so startled when the antivirals helped my own reactivity. Dr. Guyer said it didn't surprise him at all, based on his experiences. I keep asking him how they're connected, but he's a pure clinician. You don't have to know the physiology of plants to know how much water and fertilizer they need, I guess.

Did you get cross-contamination from your outdoor exposures? Did you have any specific symptoms that were different than your usual? I'm trying to keep tabs on a particular type of biotoxin (possibly mold) that exists mostly outdoors and has the following symptoms.

* Heart palpitations/pain
* Chest pressure/pain (like a needle through the sternum; a tender "marble" can often be palpated there)
* Sore/burned throat
* Skin burning (from air)
* Fingertips burn (when touching contaminated objects)
* Massive headaches (like migraine except not specific to one side)
* Chills, trembling
* Organ pain (kidney, sometimes spleen, occasionally gall bladder; usually not liver)
* Mood symptoms (panic, depression, rage, suicidal impulses)
* Vomiting, diarrhea
* Cognitive disturbances (wholly unable to do math or read)
* "White-outs" where thoughts disappear
* Extreme sound/light sensitivity
* Gait problems, loss of coordination
* MCS flares
* Difficulty drawing a deep breath
* Extreme "skin dents"
* Convulsions
* Seizures (stare into space, lose track of what's going on)
* Feelings of being paralyzed, unable to move
* Generalized feelings of agony

Your observations about how the changes in the economy and issues with illegal aliens are affecting the numbers of buildings left to rot are really interesting. That makes a lot of sense and seems relevant to my own observation that the situation with outdoor mold is getting worse.

In the Southwest in general, people don't pay much attention to roof leaks because they occur infrequently. When they do occur, places get moldy very fast. And it's my impression that the molds that grow in the SW are mostly really toxic ones. The dry air doesn't inhibit them from growing when it's raining, and after they dry up, they're even more troublesome than before.

It's a tough world out there.

 

[muller2030]

Hey slayadragon thanks for sharing such a useful information of medical tests related to mold with us.
Its really useful. Appreciate your work.

Torrance Home Inspector Service

 

[Forebearance]

Hey you all, I tested slightly positive for XMRV by serology (antibodies). Woo hoo!!!!!!!
Forebearance

 

[urbantravels]

As odd as it is to say -- congratulations!!

 

[*GG*]

As odd as it is to say -- congratulations!!

That's what i was thinking. I think I was going to say I guess.

I could find out this week, or perhaps a few more weeks, they might need more blood, time will tell!

So that's what the results say? Slightly?

 

[Forebearance]

Thanks, urbantravels and ggingues!

Yes, the official results say "slightly positive for XMRV by serology (antibodies)". Since it was a study and I got the test for free, I am not in a position to demand a copy of the actual lab report. But maybe in the future I'll get to see it. Maybe that's all it says!

It makes sense to me, because I've been practicing some level of mold avoidance for two years, and I take four different natural antiviral things. I may be succeeding in supressing it somewhat. But on the other hand, it probably just means that we need a better, more accurate test.

I think that when there is finally a blood test that's available through Quest or Labcorp, I would take it too, just to compare results.

Forebearance

 

[soulfeast]

i voted not tested and now can say i am pos PCR for xmrv and have been exposed to wdb (water damaged building) with stachy for several years. my health did not go down hill without the presence of the stachy, mold stew. i also have lyme and babesia. so something triggered something. unless the tick also gave me xmrv. i developed cfs within the last 2 years. diagnosed with babs, lyme 3 years ago. stachy in house possibly for as long.. it was a well established colony. did not start my illness with a viral like infection. have high EBV IgG titers. Thats it.. all else neg in viral realm.