Long Hauler trying to prepare for a 24h urine test

[marcjf]

Hello MCAS folks,

I am a Covid Long-Hauler. For a while I have been wondering if what I am experiencing is part of MCAS, given that is the case with many other suffering post-Covid.

I DO NOT have the typical symptoms like hives, swelling, low blood pressure, syncope, diarrhea.

I DO have Hyperadrenergic-POTS like symptoms.
And I also have intermittent inflammation on my body. This inflammation seems to have become worse recently. It affects mostly my chest. My chest feels tired when I talk for an extended period of time. And I have been feeling more random pain recently.
And while I do not have diarrhea, I do feel that my gut became more sensitive to "junkier food". But not necessarily to things like tomato, or at least it is very subtle.

In short, I have a suspicion, but not very strong indicators.

My doctor sent me for a Tryptase test recently. I did not have a strong flare-up at the time. I did try to get some exercise before going to the test (at my limit), to try and trigger a reaction. Results were very low.

Now he is sending me for a 24h histamine test. Again I need to make sure that I wait for a flare-up. Besides not taking any anti-histamines, what else can I do to make sure that I expose a histamine intolerance, if it exists, for the given test?

Exercise? Day prior or same day?
Or just relax on my diet in the days before?

Thanks

 

[Judee]

Here are some of Ken Lassessen's posts regarding MCAS. The second one down was from this month where he talks about NAC and histamine. Hope something will be useful for you or that someone else will be able to offer a helpful answer: https://cfsremission.com/?s=histamine+allergies

Of course, talk to your doctor beforehand to make sure nothing in these posts would mess up what you are trying to test for.

 

[MCASMike]

Have you tried the nicotinic acid form of B3? If not, you might want to watch this:

 

[marcjf]

Have you tried the nicotinic acid form of B3? If not, you might want to watch this:

Hi Mike, yes I heard about that as a treatment.
My concern is about making sure that I am prepared for the Histamine test. What do I need to do to make sure that I cause a flare-up, but maybe not doing too much?

My doctor told me that tryptase and histamine tests are tricky because you may miss the spike.

 

[MCASMike]

Right, the tests seem to be highly problematic, which is why I am more interested in dealing with the symptoms than getting some sort of official diagnosis. Considering that I consulted several doctors over the last 20 years or so, and none mentioned MCAS, I'm not all that concerned with what they think at this point. The reason I'll be going back to the doctor is that I want to get some oral Ketotifen and will be getting another DEXA scan next year to see where my osteoporosis is at, and to me, that will be diagnostic to some degree (since it did go from severe to considerably more dense, though still technically osteoporosis, with a dietary change and calcium supplementation).

 

[marcjf]

Right, the tests seem to be highly problematic, which is why I am more interested in dealing with the symptoms than getting some sort of official diagnosis. Considering that I consulted several doctors over the last 20 years or so, and none mentioned MCAS, I'm not all that concerned with what they think at this point. The reason I'll be going back to the doctor is that I want to get some oral Ketotifen and will be getting another DEXA scan next year to see where my osteoporosis is at, and to me, that will be diagnostic to some degree (since it did go from severe to considerably more dense, though still technically osteoporosis, with a dietary change and calcium supplementation).

Thanks for the insight. I am not going for the test for external validation. It is a way to make sure that I am treating the right thing, as I am not 100% sure if what I am dealing with is MCAS to begin. My symptoms are not that obvious.
Of course I could just start treating it, and see where it leads me, but then I would need to account for length of treatment. It may take a while to see results. And there is also the placebo effect.

I feel the tests could speed up things, as long as they are reliable. Another one that I am also planning to check is Intestinal Permeability (by measuring Zonulin antibodies).

 

[MCASMike]

Thanks for the insight. I am not going for the test for external validation. It is a way to make sure that I am treating the right thing, as I am not 100% sure if what I am dealing with is MCAS to begin. My symptoms are not that obvious.
Of course I could just start treating it, and see where it leads me, but then I would need to account for length of treatment. It may take a while to see results. And there is also the placebo effect.

I feel the tests could speed up things, as long as they are reliable. Another one that I am also planning to check is Intestinal Permeability (by measuring Zonulin antibodies).

From what I've read, the tests for MCAS are highly unreliable, which is why I wasn't all that interested in them. On the other hand, I felt very quick relief with certain meds/supplements, but nothing with others, so after you do the tests, I'd consider trying the Afrin type protocol for a few days (at least H1 second generation antihistamines in the amounts he mentions), and see if you get some relief. Then try the nicotinic acid protocol as mentioned in that video. Again, just a few days with these two interventions and I saw significant relief (along with raising the humidity by wearing a mask all day, but you can try a humidfier instead, if that is more convient).

 

[Rufous McKinney]

Now he is sending me for a 24h histamine test

Just make sure you carefully review the instructions- as i sort of screwed up my 24 hour test by THINKING I had carefully reviewed them.