Dr. Grubb Interview With 17 Year Old Woman

[issie]

Okay, found another connection with mast cells. There is a connection fo CRH - corticotropin releasing hormone. This has been indicated in FMS and autisim.

Here's a doctor at TuftsUniversity doing research on this:

http://mastcellmaster.com/

There is also a paper I found connected to CRH and endometroisis (which I also had). They are finding endometrosis lesions to have significant mast cells.

(I tried to post the link and it didn't work - but, you can find the paper in the above link on endometroisis.)

I had heard this before and knew of the connection with endometrosis and mast cells. But, this refreshed my memory.

Issie

[bellgirl]

Thank you; this was very informative

[Birdlady]

Naomi,

Cleveland Clinic dx'd me with HyperPOTS with a standing NE of only ~613 and I do not have high BP. I think Vanderbilt is more strict with their diagnosing criteria for HyperPOTS.

While I have symptoms of HyperPOTS (anxiety, shortness of breath, sweating, tremors), I just don't have the high BP issues for some reason. I can't really figure it all out. I'm not a fainter, even when my BP drops some. I just have temporary pre-syncope and recover.

Not sure if that helps any, but just wanted to share my experience.

[issie]

Thanks Dana, for chimming in - there are others out there that have told me the same thing. They don't have high bp's but were diagnosised with HyperPOTS because of high NE levels (above 600).

Issie

[HopeSprings]

Dana - really, that's interesting. Mine was 1001 - so Cleveland Clinic would call it hyperpots. But Vanderbilt says high BP is needed too.. and my neurologist at Columbia said lots of POTS people have high standing norepi - it's just a POTS indicator, not necessarily hyperpots. Ok, I give up. Until there's one accepted set of criteria, I don't think we can rely on the diagnosis. I do think there's something to the mast cell issue, but that needs so much more research too. Issie- thanks for sharing those articles. Going to read tomorrow.

[issie]

Wow, Naomi - guess you're back in the line-up for possible HyperPOTS then??????

Hope you figure it out- because it will make a difference in your treatment plan. Also, if there are mast cell issues - that makes a huge difference - some meds are not tolerated with mast cell issues.

Issie

[Anoj]

what is the test for mast cell issues? is this a simple blood test?

[L4UR3N]

I must be the only weirdo that has positive urinary methylhistamines, but does not seem to respond to H1 & H2 blockers (flushing is no better on them than off them). My tryptase was normal though, so I am wondering if food consumption can possibly affect the urinary methylhistamine levels.

I also find it hard to believe that so few patients are found to have this. Perhaps they are not doing the test correctly, or are not able to catch it. I know that my doctor did not instruct me very well (he did not say anything about collecting my urine only AFTER a flushing episode), I only knew what to do because I did my own research online.

It does seem strange that there are so many on this forum with MCA issues, yet so few in Dr. Grubbs office.... not really sure what to think

[L4UR3N]

They are finding endometrosis lesions to have significant mast cells.

Issie

...well maybe this is why mine was positive then!!!! lol

[ramakentesh]

Endometriosis seems more common in POTS and particularly CFS.

[L4UR3N]

It also seems more common in Ehlers Danlos though I'm not sure why.

[issie]

Rissy, not thinking that's why your methylhistamines came back positive - because, I had endometrosis and I have EDS too and so far - they haven't been able to catch me with science yet. Of course, mine wasn't done after having a flare either. I was doing quite well when they did their test. I do however, have an epi pen that was issued and also a standing order to have test done within an hour of another bad eposide. It's just when you're in a bad eposide the last thing you feel like doing is rush down to the hospital for a blood draw. LOL And that's what you have to do. And then start your 24 hr. urine test.

Issie

[brethor9]

mast cell illness does not just involve histamine there are over 200 receptors that could be setting off the mast cells making them twitchy (as my specialist says) ie heparin, leukotrines etc so just because you dont have high histamine levels it does not mean you are not having problems with the other receptors. Also I was told by a mast cell doctor that any elevated tryptase can be indicative of MCAS with clinical symptoms. Unfortunately testing is very expensive and very difficult to get done so I believe thats why so many with mast cell issues are not getting proper diagnosis. I for one do not need a factual clinical diagnosis to know I have mast cell issues...I have had an oncologist and dermatologist confirm I have mast cell issues and I have overwhelming symptoms including several forms of urticaria, severe dermographatism, large lymphoid aggregates in the intestines (very often a sign of mast cell) etc. Just because an illness cant be officially diagnosed to due funding issues, testing issues or knowledgeable doctors it doesnt mean it doesnt exist

[issie]

Brether9,

All indications are that I have some sort of mast cell issues too. The very bad ER visit indicated Kounis Syndrome - which is mast cells that affect the heart - the treatments given were spot on to help me and is the treatment for that problem. So, the doctors are putting probable before my diagnoisis - but, not a definite - because, we don't have the science to back it up...... yet. But, it's on my medical history and medical emergency card - that this is an issue. I do, so agree - sometimes, it may take awhile before science really figures out things that we already KNOW about our bodies. We know ourselves better then the docs and we know whether or not histamine treatments help us or not.

Issie

[ramakentesh]

Interesting. I look forward to the work by the Canadian doc on MCAs issues in POTS.

[issie]

Yeah, me too. I just got my acknowledgement back - he got my info and I'll be having a form sent to me for more info. Will be interesting to see what he comes up with - because, USA docs are involved somehow in the study with him too. I don't know if it's still open for more people or not. They were looking for I think 1,000 people. He's interested in us with MCAS, POTS and EDS - - PM if you want more info - anyone.

Issie

[ramakentesh]

Most of the pots patients on another forum i go to also have MCAD.

[ramakentesh]

for me though no obvious MCAD or EDS

[issie]

for me though no obvious MCAD or EDS

Good Rama, hope it stays that way - I didn't get diagnosised with either until I was older than you are. But, it sure does explain a lot that I never could figure out sooner.

[ramakentesh]

Im underflexible by most measures. Although i can twist my tongue upside down.

[issie]

Okay, that's pretty elasticey - but, I just had a visual and it kind a grossed me out. Ugh! LOL You can be underflexible because of your AS - you do know that - I know. I have EDS and they haven't ruled AS out for me. So, thinking you can have the two together.

[L4UR3N]

My mom used to be very flexible like me but now she has very bad arthritis and is super stiff. She can still bend down and nearly touch her elbows to the floor though hehe.

When I first read about EDS my gut reaction was "I dont have that". It wasnt until I started trying some of the things that other people with EDS could do, that I realized it might be a problem. Then the geneticist pointed out all of these other things in my life that were caused by the EDS. Suddenly everything made so much sense

[issie]

Same for me Rissy. It explained so much for me even as a child growing up.

Issie

[RichGotsPots]

its very interesting that Dr Blair Grubb says 12 of 20,000 POTS patients they see have it, other researchers have found histamine levels to be routinely normal in their patients, yet half the people on most POTS forums claim they have it.

Dr. Grubb said 12 of the 2,000 POTS patients he and a colleague see every year. Also he isn't saying that ONLY Hyperadrenic POTS people have MCAS. He didn't say out of the other 90% who else has MCAS. Also Dr Afrin, says it's very hard to diagnose MCAS, the trick is to catch it during an episode and have a proper test taking right away and put on ice to a proper lab... All and all not easy to diagnose. Every Dr. Grubb says in this video that sometimes it's just a diagnosis by exclusion. Which also makes me wonder. We could basically call it a dozen other things by exclusion too lol

[RichGotsPots]

Unpublished research and theory doesnt equal fact. Mito Docs commonly tell their patients all POTS is mito disease. When its accepted by the medical community through consensus then ill believe it. I can tell you that much published research does not support high histamines in many POTS patients.

I don't know where you heard that Mito Docs tell their patients all POTS is mito disease. I'm trying to get in to one of the top Mito Docs right now at Columbia Presbyterian and he is making it very hard because he doesn't feel they are related at all. Plus I read the same thing on the Mito association website. I have to send him my records that show an unusually fast metabolic acidosis response to exercise..

Also Grubb is mistaken about Histamine's. Allergies release histamines. Mast Cell regulate histamines but the issue isn't with histamines that's why no one I know with MCAS has IgE levels that are high..