i haven't tested VIP and never re-tested MSH. i might do that soon
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
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.
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
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.
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
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?
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
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.
Best, Lisa
I've been taking csm for almost three years now, and at significant dosages (though rarely at four packages per day) for almost two years.
At least for me, I don't think that Shoemaker is correct in suggesting that people take four doses, evenly spaced, during the daytime hours.
My own body seems to do most of its detoxifying at night. This seems to be the case for other people too (which could be why ME/CFS patients almost all feel like crap when they wake up).
Thus, taking csm in the middle of the day isn't that sensible.
At first, I did try the evenly spaced method. But as time went on, I started shifting more and more to taking it in the evening hours, plus a dose in the morning.
This usually turns out to be a dose an hour or two before bed, a dose before bed, and a dose in the morning. Sometimes I will wake up in the middle of the night and feel like having a dose. Occasionally I will feel like it's a good idea to do a dose in the middle of the day, but not too often.
Mostly I'm just doing this by intuition. I take it when it feels like a good idea, or when I feel sensations of heartburn (I think this is actually the presence of chemicals), or when I think of it. If I'm detoxifying fast for some reason (because I've recently had a big hit, because I'm in the Godforsaken wilderness, because I'm promoting detox heavily with methylation etc.), I'll take more. If it doesn't seem like I'm benefiting much, I take less.
YMMV.
Best, Lisa
@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.