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Biotoxin/Mold Illness
- Thread starter soulfeast
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mojoey
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i haven't tested VIP and never re-tested MSH. i might do that soon
jenbooks
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That's interesting, Joey.
I don't think the place matters as much as the building. Unfortunately almost all residential buildings provide copious amounts of mold food. Housing is just really badly designed that way. I've spent a year looking at and living in various places, hotels, homes, apartments, and 95% had mold issues. A few didn't. That's a lot. I'm hyper-reactive to mold, toxic mold crashes my immune system and mold, and regular molds can cause severe respiratory distress, so mold in general is a nightmare for me.
Finding a nonmoldy environment is tough, because of stupidity about construction, as well as carelessness and economics. But I've concluded that you can build a nonmoldy home just about anywhere, if you understand the climate and what you need to do.
I don't think the place matters as much as the building. Unfortunately almost all residential buildings provide copious amounts of mold food. Housing is just really badly designed that way. I've spent a year looking at and living in various places, hotels, homes, apartments, and 95% had mold issues. A few didn't. That's a lot. I'm hyper-reactive to mold, toxic mold crashes my immune system and mold, and regular molds can cause severe respiratory distress, so mold in general is a nightmare for me.
Finding a nonmoldy environment is tough, because of stupidity about construction, as well as carelessness and economics. But I've concluded that you can build a nonmoldy home just about anywhere, if you understand the climate and what you need to do.
@mojoey -
If you do end up getting them tested, I'd be interested to hear whether they are abnormal. My understanding is that Dr. Shoemaker's thinking on mold illness has continued to evolve and he now believes that after someone gets ill, that if both MSH and VIP stay low, then the person will generally not feel completely recovered. His theory is that the low VIP and MSH contribute to the disregulation of the inflammatory response mechanisms. Some of his most recent thoughts are here --
The academic basis of treatment of CFS/ME - Dr. Ritchie Shoemaker
Part 1: www.me-cfs.dk/?enquiry=29bbbc784e1d719ef5480165c5567512
Part 2: www.me-cfs.dk/?enquiry=1ff628654eb52bb75515b97bfd9f7c22
Best.
mojoey
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thanks for the shoemaker links!
Shoemaker is expected to release more information on his evaluation of VIP treatment. Though I haven't reported major improvements (contrary to what Dr. S says), I am still interested to see what he has to say about this trial. Anybody have any word on when this will be released?
slayadragon
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I got some tests done, but as usual the lab seems to have screwed some of the tests (e..g. the one that was supposed to go to National Jewish) up. Nonetheless, here's what they say.
MMP9 324 (Ref range 0-983)
Leptin 36.3 (Normal 1.1-27.5)
MSH 17 (Ref range 0-40)
VEGF 161 (Ref range 62-707)
Anticardiolipin IgG 12 (negative < 15)
Anticardiolipin IgM <9 (negative < 13)
Anticardiolipin IgA <9 (negative <12)
They were supposed to do VIP, but I don't see it here. Nor do I see TGF-b. (Could one of these be a 24-hour urine? They gave me a jug for that.)
ADH is being "verified."
These are the ones they didn't send to National Jewish. They are for Complement C3 and Complement C4 (serum).
C3 128 (reference 90-180)
C4 44 (reference 9-36)
Comments are welcome.
Best, Lisa
MMP9 324 (Ref range 0-983)
Leptin 36.3 (Normal 1.1-27.5)
MSH 17 (Ref range 0-40)
VEGF 161 (Ref range 62-707)
Anticardiolipin IgG 12 (negative < 15)
Anticardiolipin IgM <9 (negative < 13)
Anticardiolipin IgA <9 (negative <12)
They were supposed to do VIP, but I don't see it here. Nor do I see TGF-b. (Could one of these be a 24-hour urine? They gave me a jug for that.)
ADH is being "verified."
These are the ones they didn't send to National Jewish. They are for Complement C3 and Complement C4 (serum).
C3 128 (reference 90-180)
C4 44 (reference 9-36)
Comments are welcome.
Best, Lisa
Figures they would botch the ones I was most interested in. MSH is on the low side; VEGF is a lot higher than mine. My leptin is normal and my MMP-9 last time was 700 something. I believe Shoemaker said over 500 isn't good based on his research. TGF-b1 and c4a are blood tests.
My experience with this illness also has shown lab testing to be very dicey. It's extremely scary that these labs are taken as gospel.
slayadragon
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I suspect the high leptin (which I didn't have two years ago) is a result of all the sugar I've been eating recently. More mold exposures create sugar cravings for me. Once I get into a clearer area, I'm going to try caveman for a little while (just meat and veggies) to see if I can reset everything.
Hard for me to believe the ADH is going to be off, even though that's what they seem to be hinting. I only started getting (mild) static shocks over the past day or two.
Has anyone done a urine collection for this panel? What do you suppose it might be for?
I think these tests are useful in telling people who aren't sure that they are affected by mold, and who don't have CFS, whether it could be a problem for them. Like if Joey wanted to find out whether his parents were being affected by the moderate mold problem in their house, for instance.
But once people know they're sick from inflammatory illness (mold and/or CFS), the exact levels don't seem to make a lot of difference. They seem to bop around pretty randomly.
Thanks, Lisa
Lisa,
Your MSH is very low. Dr. Shoemaker has tested 1000s of people and found that MSH under 35 is not optimal - http://www.biotoxin.info/shoemakerblog/viewtopic.php?t=31 . The reason that the LabCorp reference range is 0-40 is because generally only people like you and me -- my MSH is lower than yours -- get the test. Chances are you have low VIP too; low MSH and low VIP tend to go together. Shoemaker's theory is that once these get knocked out then your body loses inflammatory control (both VIP and MSH can modulate some kinds of inflammation). It's good that the inflammatory markers you tested (MMP-9 and VEGF) aren't elevated. Hopefully your C4a and TGF-b1 are also not elevated.
I agree with floydguy that the numbers don't always correspond to how well someone is feeling, but on the other hand I've yet to see someone who reports high C4a, high TGF-beta1, along with low VIP and MSH (and one of Shoemakers "susceptible" genotypes) who doesn't report feeling absolutely terrible.
slayadragon
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Well, if I were really well at a core level (e.g. MSH), likely I wouldn't have to do any avoidance at all!
The fact that I can have as low inflammation as I did -- and feel as okay as I did even during "suicide season" in Chicago -- suggests that avoidance does work. And for whatever reason (presumably detox and/or pathogen killing), I'm needing to avoid biotoxins less and less as time goes on.
Gerwyn -- who's the only person I've found who's trying to piece these things together -- seems to think that the inflammatory control is lost because of the active XMRV. It may be that other pathogens (herpes viruses, Lyme) contribute as well. So I'm just going to keep chipping away at them, until hopefully everything resets.
And if not, doing what I'm doing is an accomplishment compared to how sick I started out. Basically nobody gets this well from where I started. (I've found half a dozen so far, all of which have addressed things using basically the same approach.)
I can't remember and don't have the Shoemaker book easily available. Is high VEGF good or bad?
Thanks much for your comments.
Best, Lisa
VEGF - Most of Shoemaker's patients are low in VEGF. Some are high, though. Can't remember how that works or the significance. I am low.
I just re-read my post from before. I meant ANY lab tests, not just the biotoxin labs, shouldn't be taken as absolute gospel. I am very, very suspicious of how our samples are handled, processed, etc.
I just re-read my post from before. I meant ANY lab tests, not just the biotoxin labs, shouldn't be taken as absolute gospel. I am very, very suspicious of how our samples are handled, processed, etc.
*GG*
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Is this the MSH that people are referring to: melanocyte stimulating hormone (MSH)?
GG
GG
Lisa,
As floydguy mentioned, my understanding is that people with a chronic inflammatory response syndrome (CIRS) often show abnormally low or high VEGF with low VEGF being more common. One other thing -- actually your VEGF is very elevated.
MSH - yes, this refers to melanocyte stimulating hormone. Most of the research is concerned with MSH's effects on skin pigmentation, appetite and libido. However, it also regulates or affects a number of other things such as sleep, digestion, neurological function, central nervous system function, inflammation etc. etc.
Re: whether another mechanism/disease (Lyme, XMRV etc) must always be present to cause the inflammation and permanent CFS symptoms. Shoemaker just published a paper where he examined patients with chronic ciguatera poisoning (from eating poisonous fish). The patients' only exposure appeared to be from the ciguatera poisoning and they displayed the CIRS biomarker abnormalities such as - low MSH & VIP, elevated C4a and TGF-beta1 etc.
http://www.national-toxic-encephalopathy-foundation.org/ritchie.pdf
I hope that Shoemaker's vasoactive intestinal peptide (VIP) study reports great improvements in patients. I'm not all that hopeful b/c everyone I've heard report on their Aviptadil experience (the specific VIP drug Shoemaker is studying) didn't get any improvement. I've seen reports that Aviptadil doesn't increase blood/plasma levels of VIP which might be the problem. In other words it might be that the problem is Aviptadil, not VIP supplementation. The thing I'm most worried about is that Shoemaker's study doesn't work out and the area (MSH and VIP supplementation) continues to be ignored.
One of the worst things (in my opinion) that happened this year in the CFS medical literature was that some Japanese researchers reported that CFS patients have elevated melanocyte stimulating hormone (MSH). That's the exact opposite of what I believe is true and it's going to put a number of researchers on the wrong trail.
slayadragon
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There's a long thread about the ciguatoxin question on "the other board." Gerwyn suggests that the ciguatera epitope actually is anticardiolipin, and can be produced by XMRV on its own. But it seems that it also could be produced by Stachy on its own. So basically, it's meaningless in terms of giving us information about what's making us sick, other than that it might be one of the "usual suspects" (viruses, Lyme or environmental biotoxins).
That study of Shoemaker's is interesting because it suggests that 4% of people who get ciguatoxin poisoning go on to have chronic ciguatera. That's not all that far off from the % (4-7%) of members of the general population who have been found to be XMRV+.
Maybe the difference between the people with chronic vs. transient ciguatera poisoning is whether they have XMRV. Just a thought.
We don't have any idea whether the people in Shoemaker's paper had mold poisoning as a prior risk factor either. He didn't do those tests before they ate the bad fish. Maybe the ones who got sick permanently from the ciguatera were ones who already had a lot of Stachy exposure. Or who had a lot of Stachy exposure AND who had XMRV.
The problem is that all of these measures are indirect. We know that people are sick, but there's always a question mark about what's causing it. If somebody doesn't want to believe that biotoxins are an issue for us, they can just say "That's just CFS, from the virus" and dismiss the whole thing.
I need to learn more about the test for trichothecenes in the blood. That would be a clear indication of whether people actually have been affected. Has anyone gotten that test?
Does Shoemaker have information on VEGF --- what level he thinks is high/low, what it means to have it high vs. low? Why is it that I always feel like I'm pulling teeth to get any information from him? It's not like I'm not looking for the information or open to his opinion.
Do you have the reference for that Japanese study?
Thanks for your thoughts.
Best, Lisa
Shoemaker believes under 31 is low. On my test sheet it just says under 31. It doesn't give a number. But it has been 34 in later testing. As I recall, Shoemaker suggests this is associated with the capillary hypoperfusion, ie contributing to brain fog. I really don't know what to say about high VEGF.
soulfeast
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that makes sense, lisa. i feel better when I take before bed sometime and around noon-2 pm and early evening. i dont go to sleep until 3 am, so my bedtime dose is usually around 2 am. 4 feels too much.
soulfeast
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Thank you for these! My VIP is low. MSH low. VEGF normal and EPO a smidge high which may be bringing up the VEGF. c3a normal.. c4a and tgf-b1 high.
not sure what this means, but my macrons test was neg even though msh is low. i did have this test run 3 years ago and it was pos for scant growth and we treated with mino only.. ive been on abx on and off for lyme, possibly it was hit well with that txt or with the nasal gse spray and silver ive used on and off. ?? or bad test.
just heard of someone bedbound with mold illness who is responding well to VIP nasal spray from Hopkington pharmacy.
very interesting how shoemaker has my hla type associated with lung issues... very true for me.
my daughters hla type is associated with hypermobility which she also has. she was not as effected by the stachy in our house as me and her c4a was not elevated, but the lab was routed to cambridge and not national jewish center. we are trying again using the labsheet from shoemaker, hoping its the lab code that was the issue. also checking tgf-b1 since it tends to run with c4a.
both of our mmp-9 labs were not run. md has to have a special authorization to run that lab..?? trying again.
i went though a hard period of unmasking maybe 3 weeks into the move we made... have a cold now and recovering. so not sure how reactive i still am. my daughter has not gone through this but her dysautonomia seems worse. she has chronic candida and im seeing that connection with t-17 being out of whack and living in a mold house. also gluten intolerant though i have one of the celiac genes so not sure how and if related to mold illness.
not sure what this means, but my macrons test was neg even though msh is low. i did have this test run 3 years ago and it was pos for scant growth and we treated with mino only.. ive been on abx on and off for lyme, possibly it was hit well with that txt or with the nasal gse spray and silver ive used on and off. ?? or bad test.
just heard of someone bedbound with mold illness who is responding well to VIP nasal spray from Hopkington pharmacy.
very interesting how shoemaker has my hla type associated with lung issues... very true for me.
my daughters hla type is associated with hypermobility which she also has. she was not as effected by the stachy in our house as me and her c4a was not elevated, but the lab was routed to cambridge and not national jewish center. we are trying again using the labsheet from shoemaker, hoping its the lab code that was the issue. also checking tgf-b1 since it tends to run with c4a.
both of our mmp-9 labs were not run. md has to have a special authorization to run that lab..?? trying again.
i went though a hard period of unmasking maybe 3 weeks into the move we made... have a cold now and recovering. so not sure how reactive i still am. my daughter has not gone through this but her dysautonomia seems worse. she has chronic candida and im seeing that connection with t-17 being out of whack and living in a mold house. also gluten intolerant though i have one of the celiac genes so not sure how and if related to mold illness.