Mast Cell 'issue' question

[Guest KiminOrlando]

I have some kind of mast cell issue. Doctor ruled out MCAS and won't call it MCAD. People with mast cell involvement, does it impact your bladder? I have Interstitial cystitis and the meds seem to be helping that. Does it effect your lungs? I have Interstitial Lung Disease. My O2 levels randomly drop to the mid 80s and they can find no reason. They can't catch it to run tests. I'm so dizzy and out of breath today. O2 is hovering around 90. Does mast cell stuff effect the digestive tract? 

I am on Xyzal, a prescription H2 blocker (can't remember), Singulair, and Naltrexone. I was taking 12mg of Naltrexone and it even stopped my night sweats, but made my POTS worse. Does Naltrexone make your POTS worse? I now take 6 mg, but night sweats, bladder issues and breathing problems are back. POTS is now better enough to struggle through a shower with the help of a shower stool. Was having to get out with shampoo in my hair and lie flat for 30 minutes. Haven't broken out in a rash or had lips or tongue swell, so that is also improved. 

Sign me...

Huffing and puffing in Orlando

[MTRJ75]

How was MCAS ruled out? 

Listening to the 2020 Dysautonomia Int Conference presentations, mast cell issues are brought up in almost every single one and some of the doctors don't seem to trust currently available testing. They often figure it out by trying to stabilize mast cells and see how patient responds. 

From what I've been listening to and reading, the digestive tract is certainly affected. That's where most of the immune system is located. 

Someone who knows Naltrexone more than I do should probably comment on this, but I thought you weren't supposed to go past like 4mg of LDN (otherwise it's no longer really low dose I guess and benefits decline). 

Anyway, I just got my neuro to trial Clarinex, which I believe is an H1. Just started this week and not really doing anything yet, but I also read it suggested somewhere that you need an H1 AND H2 for severe cases. I don't know, maybe you're already on the medications they would put you on even if MCAS was confirmed. 

[CallieAndToby]

Antihistamines are used for IC and known to help. I think for some people there is a connection. 

[Guest KiminOrlando]

3 hours ago, MTRJ75 said:

How was MCAS ruled out? 

Because it was. That is really all I get from my doctor. It is frustrating. I think it was a blood test. I didn't do the 24 hr urine because I wasn't sure insurance would pay and I read it needs to stay refrigerated. I was supposed to do it through Quest. Quest does not refrigerate their samples because they say it is unnecessary. I decided my test would be invalid or give a false negative, so I didn't do it. It concerns me Quest doesn't do this test correctly. 

Xyzal is an OTC H1, so I am on an H1 and H2 in addition to Singulair and the Naltrexone. My doctor says it only comes in 50 mg tablets and I was cutting it in quarters, but now I'm cutting it in 1/8ths. I also take OTC Quercetin. 

I really feel like this doctor means well, but doesn't have any experience with dysautonomia. Because I also have autoimmune diseases, I think they are trying to blame that. I'm betting that they are barking up the wrong tree. 

[Guest KiminOrlando]

@CallieAndToby22Thanks. That is good to know. 

[CallieAndToby]

1 hour ago, KiminOrlando said:

@CallieAndToby22Thanks. That is good to know. 

No problem. 

[MTRJ75]

1 hour ago, KiminOrlando said:

Because it was. That is really all I get from my doctor. It is frustrating. I think it was a blood test. I didn't do the 24 hr urine because I wasn't sure insurance would pay and I read it needs to stay refrigerated. I was supposed to do it through Quest. Quest does not refrigerate their samples because they say it is unnecessary. I decided my test would be invalid or give a false negative, so I didn't do it. It concerns me Quest doesn't do this test correctly. 

Xyzal is an OTC H1, so I am on an H1 and H2 in addition to Singulair and the Naltrexone. My doctor says it only comes in 50 mg tablets and I was cutting it in quarters, but now I'm cutting it in 1/8ths. I also take OTC Quercetin. 

I really feel like this doctor means well, but doesn't have any experience with dysautonomia. Because I also have autoimmune diseases, I think they are trying to blame that. I'm betting that they are barking up the wrong tree. 

It seems like you're already getting some MCAS treatment even if the doctor doesn't buy into it. 

Again, someone else will probably know more than me, but I believe there are special compounding pharmacies for LDN. It still seems you're taking too large a dose and probably not exactly the same amount each day. 

As to that last part, I'm not sure what AI is responsible for in us, but perhaps AI issues are the cause of most of our issues. 

[Muon]

Option:  You could Try Neuroprotek or PureLut, at least 2 capsules in the morning and 2 in the evening (build it up and could add 2 during mid-day if not strong enough) ) for a minimum of 4 weeks.

 

[Coffeebean]

Hi, my urine and blood tests did not confirm MCAS. But I do feel better on the chromoly. So they are calling it clinical MCAS. Also I am on LDN 7mg I have to get it compounded at a medical pharmacy. I take mine for pain. Not sure if I think it is working or not.

[p8d]

I, too, tested negative for MCAS but take quercertin and singular daily. I recently started LDN for pain (from a compounding pharmacy) at 1mg the first week and working up by 1mg/week to 4mg. On the advice of the pharmacist I had to stop it for a few days before my first vaccine and then stayed off it for 4 days and restarted at 1mg/day for a couple of days yesterday. I will increase every few days back to 3mg/day which is where I was before the shot. I have not noticed any difference in my dys symptoms but my inflammatory arthritis, migraines and a trigger finger have improved. Cause and effect? I have no idea but certainly possible. The higher doses of 2-3mg have increased insomnia which is a known side effect. Can you find a compounding pharmacy? 

[MTRJ75]

I just watched Dr Chopra's presentation from the Dys Conf 2020 on Pain Management in Dysautonomia. I highly recommend if you have access. 

At the 20 min mark he goes into Mast Cell treatment. 

At the 40 min mark he goes into LDN, which is one of his favorite treatments. 

[CallieAndToby]

2 hours ago, MTRJ75 said:

I just watched Dr Chopra's presentation from the Dys Conf 2020 on Pain Management in Dysautonomia. I highly recommend if you have access. 

At the 20 min mark he goes into Mast Cell treatment. 

At the 40 min mark he goes into LDN, which is one of his favorite treatments. 

I tried LDN at a tiny dose and it gave me horrific insomnia. Unfortunately that is a common problem amongst patients but there is some scientist in Birmingham, AL trying to resolve that side effect because, potentially, a great drug. 

I just know it regulates cytokines, reduces inflammation, and is used for cancer as well. I'm not sure about it's used for Mast Cell. 

[Guest KiminOrlando]

Just wanted to give an update... my Immunologist has tentatively made a clinical diagnosis of Mast Cell Activation Syndrome for me. The meds made my interstitial cystitis better, my migraines, my rashes, my lip swelling, and my breathing is better. I had an 18% increase in airflow on my last PFT. I'll be following up with him in 2 weeks with the PFT data so he has something that isn't subjective to back up his diagnosis. 

Thank you for the help.

[Pistol]

@KiminOrlando - boy, am I glad you found something that helps! You've had a rough time at it for so long! Thankfully now you have a diagnosis - and meds that seem to help. So happy to hear it!

[Guest KiminOrlando]

@CallieAndToby22 Is the scientist working on LDN at UAB in Birmingham? Do you happen to know their name?

[CallieAndToby]

19 hours ago, KiminOrlando said:

@CallieAndToby22 Is the scientist working on LDN at UAB in Birmingham? Do you happen to know their name?

I can look it up right now. His name is Jarred Younger and he has his own MEpedia. "American researcher who leads the Neuroinflammation, Pain and Fatigue lab at the University of Birmingham, Alabama" Edit: as I remembered from years ago, one of his areas of research and expertise is with LDN. 

Edited May 7, 2021 by CallieAndToby22
added more information

[Nin]

On 5/6/2021 at 8:34 PM, KiminOrlando said:

Just wanted to give an update... my Immunologist has tentatively made a clinical diagnosis of Mast Cell Activation Syndrome for me. The meds made my interstitial cystitis better, my migraines, my rashes, my lip swelling, and my breathing is better. I had an 18% increase in airflow on my last PFT. I'll be following up with him in 2 weeks with the PFT data so he has something that isn't subjective to back up his diagnosis. 

Thank you for the help.

What test did the immunologist do? Just seen one recently and had tryptase tested. Still waiting for results 7 weeks later! Wasn't reacting at the time so don't know if he's just gonna go off that 

[Guest KiminOrlando]

@NinThere was no test other than what you had. Mine was negative. He made a clinical diagnosis which means he decided I have it without any positive tests based on my symptoms and my response to the meds used to treat MCAS. I'm hoping the PFT results will give his diagnosis some kind of scientific credibility instead of being an educated guess.

[Guest KiminOrlando]

@CallieAndToby22 Thanks for the info. My family lives within a couple of hours of UAB so maybe one day I will make an appointment. I have been toying with looking in to a Dysautonomia doctor there or Vandy. UAB seems to have a good autoimmune disease department as well, so I am tempted to go there despite Vandy's reputation. My doctor at Vandy retired so I would be starting over.

[Nin]

24 minutes ago, KiminOrlando said:

@NinThere was no test other than what you had. Mine was negative. He made a clinical diagnosis which means he decided I have it without any positive tests based on my symptoms and my response to the meds used to treat MCAS. I'm hoping the PFT results will give his diagnosis some kind of scientific credibility instead of being an educated guess.

Yeah I'm expecting mine to be negative. Because my lips don't swell, get hives etc I don't think he thinks I could possibly have mcas. Its really weird with me because eating nuts causes me to have seizures and he was kinda scratching his head as why this would happen. Glad you're going in the right direction now. 

[CallieAndToby]

22 hours ago, KiminOrlando said:

@CallieAndToby22 Thanks for the info. My family lives within a couple of hours of UAB so maybe one day I will make an appointment. I have been toying with looking in to a Dysautonomia doctor there or Vandy. UAB seems to have a good autoimmune disease department as well, so I am tempted to go there despite Vandy's reputation. My doctor at Vandy retired so I would be starting over.

I asked my PCP 6 months ago to refer me to UAB's autonomic lab stat line and he never did. So I'm waiting on Vanderbilt but the seizures are getting longer, more frequent, and it's just not good. What were they able to do for you at Vanderbilt? 

[Guest KiminOrlando]

I was put through a bunch of diagnostic testing and put on meds that made my life much better. My doctor was Dr. David Robertson who is now retired. He took his time and looked at everything. I hope you get a good one and they can help you like they helped me.

[Guest KiminOrlando]

Bump

[Guest KiminOrlando]

Saw Mast Cell specialist at Vanderbilt this week. This is what I got from my visit.

I don't have Mast Cell Activation Syndrome or MCAD, but he said Mast Cell issue should be looked at like a spectrum very similar to the way autism is looked at. I am on the Mast Cell spectrum. Once you are on it, you aren't necessarily on it forever. You can get caught in a Mast Cell loop. NSAIDs lower the threshold and create an opening for Mast cells to overreact. Mast Cells are like water balloons full of histamines and mine are leaking. They are dropping histamines in strange places causing all kinds of problems. They are still learning everything leaky Mast cells can do. The plan for me is to be on meds to block the histamines and see if I am able to get out of the loop and off the Mast Cell spectrum. 

I was lucky enough for them to ask about my full case and about my Dysautonomia, so they have put in an internal referral to Vanderbilt's Autonomic Clinic and their Rheumatology department. It looks like my case may be fully moved to Nashville by the end of the year.

[Pistol]

@KiminOrlando  that is great news! With your complex case I am sure it is a relief to have all of your specialits in one place, and have all your symptoms addressed by informed specialists! Good Luck!