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MMP-9 levels and MCAS

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Posted 9/4/2019 8:27 PM (GMT 0)
In a new article wrote by Dr Raj Patel, Thalia Farshchian, Scott Forsgren, it states mmp9>400 is indicative of uncontrolled inflammation due to MCAS.

<250 normal. MCAS unlikely
251-399 - lyme, mold or mild MCAS

For those that suspect MCAS, what was your level. Mine was 470.

https://www.betterhealthguy.com/images/stories/pdf/townsend_mcas_2019.pdf
Posted 9/4/2019 9:15 PM (GMT 0)
I haven't heard of that test....wonder if I can even get it.
Posted 9/4/2019 9:23 PM (GMT 0)
Thanks for posting the information K07


Wow - The restricted foods:

No lemons (there goes the lemon water detox)

No blueberries OR strawberries!
No plums....

No cheese, and no Kefir. (I take kefir as one of my probiotic options)
Posted 9/4/2019 9:29 PM (GMT 0)

sandyfeet said...
FWIW Girlie I wasn’t able to find it when I went to Ontario for testing (NDs have access to most tests through DynaCare labs there). I wonder if it goes by some other name here.

I would like to test for it...so I can either treat it or stop worrying about it.

maybe I'll have to do it when I'm in DC next...but that will be 6 months from now....
Posted 9/5/2019 1:23 AM (GMT 0)
I would also ask for these tests:

Matrix metalloproteinase-9 (MMP-9) (LabCorp; serum)
• N-Methylhistamine (Quest; 24-hour urine)
• Histamine (LabCorp; plasma)
• Tryptase (LabCorp; serum)
• Prostaglandin D2 (PGD2) (Quest; 24-
hour urine)
• Chromogranin A (Quest; serum)
Posted 9/5/2019 1:47 AM (GMT 0)
Is this a cheap test you can get from the GP or is it a specialized/expensive test?

k07 how much are all those tests?
Posted 9/5/2019 2:52 AM (GMT 0)
Mmp-9 is through labcorp and covered by most insurance.

I have not had the other tests yet. I’m guessing you could ask your gp. I’m hoping to get them when I see allergist/immunologist in Oct.
Posted 11/15/2019 4:43 PM (GMT 0)
After 13 months of treating my doctor tested me for MMP-9 for the first time. My level was 540 which indicates I could be dealing with MCAS. I don't really have any of the symptoms associated with MCAS except for possibly air hunger/chest tightness so it is a little confusing but never the less it was elevated. The article you posted basically says they think 90% of lyme patients could be dealing with this. If this is the case I'm confused why would my LLMD wait so long to test me for this. Are people on here being tested for this by their LLMD?
Posted 11/15/2019 5:56 PM (GMT 0)
MMP-9 is one of many tests people use to point toward MCAS, but there is not one specific test for MCAS. MMP-9 also can be elevated due to mold toxicity and other causes of inflammation. Usually when I hear people talk about MMP-9 it's because they are being tested for mold toxicity and chronic inflammatory response syndrome.

Unfortunately MCAS has only hit many doctors' radars recently. Respiratory and skin symptoms usually make people think of MCAS, but it can encompass lots of other symptoms common with Lyme - anxiety, brain fog, fatigue, food allergies, all kinds of digestive issues, POTS - as well as making people more reactive to treatment and prone to side effects and stronger herxes. It's worth examining, as treatment can be straightforward and can make a big difference.
Posted 11/15/2019 8:15 PM (GMT 0)
Just spoke with my doctor and he said he has been testing me the whole time for possible MCAS but with different test. This MMP-9 is something that is relatively new and he just heard about it a month ago at one of his conferences with other LLMDs. Thought this was interesting as maybe this could be something that is holding people back.
Posted 11/15/2019 9:22 PM (GMT 0)
Huh, that's odd to hear that your doctor thinks it's a new test. My MMP-9 has been tested for years to monitor mold issues, and it's covered by insurance, done through Quest or LabCorp. What has your doctor been doing to test you for MCAS in the past?
Posted 11/15/2019 9:46 PM (GMT 0)
Hmm sounds like he just wasn't aware of this test. I forget what he said he was using to test for it but it started with a T.
Posted 11/15/2019 9:51 PM (GMT 0)
Probably tryptase. I've heard that's very useful but only if the blood draw is done within 12 hours of exposure to your MCAS triggers.
Posted 11/15/2019 10:30 PM (GMT 0)
Yes I think that was the one. Anyhow based off the low amount of responses it appears people may not be getting tested for this which is kind of surprising to me.
Posted 12/20/2019 10:53 PM (GMT 0)
I went on a low histamine diet the last 4 weeks after having my MMP-9 level come in at 550. My results came back in even more elevated at 860. I was adding in some new supplements this month but was also taking couple things for the histamine issue. I’m thinking maybe it is one of the supplements that caused the increase. I also have almost none of the typical MCAS symptoms so very confused as to what is going on with my level. My doctor says I should test for candida. Does that associate with mmp-9 being elevated? Iv also already had my house tested for mold and came back clean. Just seeing if anyone has any thoughts from their experience.
Posted 12/20/2019 11:14 PM (GMT 0)
Would you mind sharing what your new supps are as well as what you are taking for histamine issues? That does seem like a surprising turn of events! Thanks for the update.

I don't know if there's a relationships between elevate MMP-9 and candida, but that seems like a possibility.

How have your symptoms been since treating for MCAS? Any improvement in anything you normally deal with? For me, MCAS presented as brain fog more than anything, sometimes dizziness, fatigue, or digestive discomfort - not thought of as typical MCAS symptoms, but definitely related to MCAS in my case.
Posted 12/20/2019 11:20 PM (GMT 0)
Mine in January was 527 and no one ever said a word to me about it being connected to MCAS. I know I have it...very itchy and taking clartin 2x per day.
Posted 12/20/2019 11:23 PM (GMT 0)
I had my MMP9 tested again in September. It was 203 - so normal. I was definitely having MCAS symptoms for a while before that due to mold exposure but had gotten it under control.

I get CIRS labs done periodically, but I find them quite confusing. My results rarely parallel my symptoms. I always have some that are out of the Shoemaker (or lab) range, but it varies as to which ones.

I look at it, mull over, compare results to previous labs, but I try not to get stuck on it. I believe a lot of doctors who formerly followed Shoemaker have stepped away from his rigid guidelines, as they were not finding the results to be consistent in their clinical practices.

My personal hypothesis is that Shoemaker may have been treating a greater proportion of patients who were straight mold or biotoxin patients, whereas some of these other doctors may have a greater proportion of patients with multiple tick infections and other chronic issues with mold in the mix. Just my guess.
Posted 12/20/2019 11:26 PM (GMT 0)
Agreed, WBF - Shoemaker tests are mildly informative, but they are just part of the picture.
Posted 12/20/2019 11:29 PM (GMT 0)
Iv introduced these supplements (one every 2-3 day)

histamine block
artemesia
trycline
mastica
5-HTP
B-Complex Plus
Mag Glycinate
SAMe
Saccharomyces Boulardii probiotic

I also was taking histamine X but I felt more itchy with it so stopped.

I haven’t noticed a big difference since going low histamine. Overall I have been better but I was already feeling a lil better even before starting the low histamine diet.
Posted 12/20/2019 11:31 PM (GMT 0)
I’m Defitniely a lil itchy sometimes so that could be related to the MCAS I’m sure
Posted 12/21/2019 1:28 AM (GMT 0)
My MMP-9 was 684 when it was tested in 2015. I haven't had it checked since. My doc was testing for mold illness at the time but the only other inflammatory marker that came back was high tgfb-1. I also didn't yet have a diagnosis of MCAS. It took like 3 more years for that to come
Posted 12/21/2019 6:20 PM (GMT 0)
I was tested for chromagranin A, histamine, and tryptase by Labcorp and was negative for all three.

My LLMD said that was a false negative and need to do it again.

Since the test was done for "research" as stated on Labcorp CPT code I paid $300 plus a $50 Uber ride so I wont be doing it again. My health insurance wouldn't pay since for research.
Posted 12/21/2019 6:20 PM (GMT 0)
I was tested for chromagranin A, histamine, and tryptase by Labcorp and was negative for all three.

My LLMD said that was a false negative and need to do it again.

Since the test was done for "research" as stated on Labcorp CPT code I paid $300 plus a $50 Uber ride so I wont be doing it again. My health insurance wouldn't pay since for research.
Posted 12/21/2019 6:20 PM (GMT 0)
I was tested for chromagranin A, histamine, and tryptase by Labcorp and was negative for all three.

My LLMD said that was a false negative and need to do it again.

Since the test was done for "research" as stated on Labcorp CPT code I paid $300 plus a $50 Uber ride so I wont be doing it again. My health insurance wouldn't pay since for research.
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