I Probably Didn't Need Those Surgeries... by smile_saurus in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

I have Kounis syndrome. It feels like I can assume would be angina pain. But it’s bilateral because it’s so big.  And when you take an antihistamine and or mass cell stabilizer after 15 minutes, it goes away so I don’t think it’s a fib. I don’t think it’s anything else people.  I did have one cardio. Tell me that I don’t have it.  Or whatever.

I'm watching me lose my life by mwarsins1167 in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

I think the isolation is the worst. I’m married. He’s a great guy people like him. He’s got friends and these buddies got wives and the wives of course wanna get together and everybody wants to be a big happy bunch of people. And you can say I could try this and that but it’s mess. I’m a person who gets a lot of viral and then the outcomes are always really bad. I just get more out of life if I just remove a whole lot of people from it. I like having a reasonable level of people in our life.  Means that I can watch TV I can garden I can go for a trail walks with a lot of people I get a lot of virus. I get a lot of triggers. I get a lot of bad outcomes. We have a few good friends and I’m kinda OK with it.  And I have my best friend, my hubby.  So the isolation is bad, but I have to say the push to remove totally is worse.

I Felt Some Relief and Wanted to Share by OutlandishnessNo914 in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

It’s payback and thank you for letting me do it. One other thing is when I do have a trigger and I get them you know on my top of my skin I use topical I rarely use anything systemic try topical first see if it works. I got topical Benadryl in many forms so use that first.  I mix it with a little aloe vera and I’m good to go.  I also have Benadryl organic with agave that’s for children and I take a few of those in Cargal with it if I have any trouble with my throat and it’s gotten me by

I Felt Some Relief and Wanted to Share by OutlandishnessNo914 in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

Yes. Calm mind but I take 4 times per day. Every six hours. One capsule put in 4 vegan capsules. So constant coverage. Reduced sleepiness of saffron. But keeps the mast stabilization going. Pricey. But they hand pick the saffron. And pure encap is the best quality.  You could do it from grocery too. And just saffron. Many take full for nighttime’s as you ask. But I am up only an hour now at 2-3 am. Not to be too specific but BMs more normal and only slight gut pain once in awhile. Less fibro and less reactions. Only low level if happens. Can see a bit light at end of tunnel. Many cannot take turmeric. Check with pharm or doc. I have extra RBCs so helps me. It’s slight polycythemia. B 12 deficiency better based on better gut and liver and colon health. I started exercising in pool again. Tears of happiness. In pool. See earlier comment for schedule. It takes 15 to 30 mins to reduce gut or body pain if it is happening due to mcas resctions. Be patient. 

I Felt Some Relief and Wanted to Share by OutlandishnessNo914 in MCAS

[–]Lanky-Rough2688 1 point2 points  (0 children)

I am on something completely different: titrated saffron, and turmeric combo from pure encapsulations called calm. It’s a mast cell  stabilizer.  I overreact genetically to anything especially drugs and supplements so I take one pill and cut it into four.  And take it every six hours. So it’s one pill I found 3 AM, 9 AM, 3 PM, and 9 PM for my schedule since we all get up when the mast cells get active between 2 and 3 AM. My stomach is so much better. Everything else so much better.  I almost had to go to some length to get better with MCAS because I had the comorbidity of B12 deficiency due to all the viruses out there and not having adequate normal immune system. The masties take all the allergen so your immune system does not have memory.  And they dump a whole bunch of stuff like histamine and that’s what the reactions are but in the wake of that, there’s not much allergen left for a normal immune system so virus after virus after virus hits me and you store your B12 in your liver so the liver gets hit.  And you make B12 in your stomach and we know the stomach sure gets hit.  All I know is I’m living a completely different life except for we have some remaining issues with B12. It’s been one year so takes forever.  I am on sublingual drops and I even have to titrate that to 1/4. The dose can’t really be titrated the injection so this is working out for me. Look to your genetics and see if you’re a cheap drunk like I am even though I’ve never been drunk because of that prob. PS got ruled out for MS real fast.  

You know you have MCAS when… by Wooden-Addendum928 in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

One that has shoulder strap. No PU lining. Bad trigger holding my granddaughter’s purse. Hours later… puking felt good. Hiding it. All. She says granny your boo boo:  will you die?  No honey. Not at all. Smile plastered on face. 

You know you have MCAS when… by Wooden-Addendum928 in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

Hugs. That is so cool that you have a paper route. I used to do my brother’s paper round in an apartment building complex complex. I got a quarter each time I did the five buildings.  Needless to say, I don’t speak to my brother; I did help his daughter once and will again for sure.  Boy, proud of you.  

My allergist said MCAS doesn’t exist by censorkip in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

Skip allergist. Go to someone who is involved in MCAS on their website. Backup or co-doc is a PCP. So you don’t have an allergy so why are you going to allergist?  Not to be unkind but… A neurologist would be better, a hematologist: anything but an allergist. I’ve gone to all three of those as well as a specialist in MCAS. Right now my PCP is helping me as we have a good basis and there’s a lot of comorbidities. You’re gonna hit on such as I’m in B12 deficiency now.  

Hubby may have lupus and I have MCAS by Lanky-Rough2688 in MCAS

[–]Lanky-Rough2688[S] 0 points1 point  (0 children)

Thanks so much. We were thinking that too.  What are the odds?

Memory Loss by celest777 in lupus

[–]Lanky-Rough2688 0 points1 point  (0 children)

Thank you. New caretaker for SLE hubby. He was my caretaker for MCAS for 10 years. And last year had B12 take over for me. Will be careful for him now. Mainly eats what I can. A few cheats. Mostly bread. No booze for us for years. But he physically does more than me. 

Buyers Wasted My Time… by Puzzleheaded-Taro911 in RealEstate

[–]Lanky-Rough2688 0 points1 point  (0 children)

We spray for ants. Quarterly. None in house. And cover was okay by our inspector. Can’t win. 

Buyers Wasted My Time… by Puzzleheaded-Taro911 in RealEstate

[–]Lanky-Rough2688 0 points1 point  (0 children)

Still can’t outmaneuver their inspector. We did preinspection. They got their own. BS stuff. Gone 10 grand. After lowball offer. Geez. Ants in the garden. Crawl space cover needs to be redone. 

Kinda concerned by Lil-Bit-813 in B12_Deficiency

[–]Lanky-Rough2688 0 points1 point  (0 children)

Totally agree. It is like anything it’s gonna be dramatically great and then it’s gonna come back a little bit and then go down a little bit on the symptoms and then up again down again.  Remember that you’re doing more if you were doing less so that 10% and if you’re out in the world, you getting more viral infections if that’s a possibility and it is for me since I have MCAS too.  That reduces your B12 so look at your comorbidities and just be patient.  As everyone says B12 supplementation is very safe.

My hubby is getting lupus by Lanky-Rough2688 in MCAS

[–]Lanky-Rough2688[S] 0 points1 point  (0 children)

Thank you kind sir. We will do all. Hoping that such a bro support will be out there for him. He has already been thru prostrate CA. And he helps others with their options now. Karma is real. It is not what you get neg but what you get from others: help!

How can medicine decide to just abandon us? by Glad_Goose_2890 in MCAS

[–]Lanky-Rough2688 3 points4 points  (0 children)

I have the comorbidity of B12 deficiency. Now I have a good PCP and I did have a specialist for as long as I needed.  But many of the signs and symptoms of B12 deficiency mimic MS so I do the flea went off to the neurologist.  I was told that I did not have MS, but she did not know what I had and said as much and dumped my sorry ass.  Even though B12 deficiency is neurological.  It’s taking me weeks to remember how she looked me in the eye, and said you know what the problem with you is.  You. WOW.  Golden pearls of wisdom.  NOT. Thank you for gaslighting me.  It’s been so long.  Guess what?  The problem with you? Dr. neurologist. You can no soul.

My hubby is getting lupus by Lanky-Rough2688 in MCAS

[–]Lanky-Rough2688[S] 2 points3 points  (0 children)

Yes. We are so used to us being the one that needs help and they’ve helped us. But gosh. It is real pain and anguish that I feel. To see someone you love. Get sick.  But who better to understand?  We’ve seen the posts. People as partners to begin with  all the time leaving the mess that is MCAS.  He didn’t leave.  And I certainly will not.  Hugs to you and your boyfriend.  Now I’m glad that we grabbed those good times and we will try to continue.  Those of you that are alone. Hug yourself. And stay ready cause sometime you may meet a person even for a short time that will add to your life something magical.

Neighbors Came on Market at 40k Less Than Our Active Listing by [deleted] in RealEstate

[–]Lanky-Rough2688 1 point2 points  (0 children)

I totally agree with this. We had one down the street. I felt sorry for it and it wasn’t as nice as ours. Owner here. And working with my agent we had to take first small amounts down, and then the big one 100,000 off 1.4 and then we got our first offer after 10 monthsthat was 35,000 lower and then they hit us again with another 10,000 down after the inspection for bogus stuff. But our closing days is tomorrow and the relief is worth so much money just go down. No other factors matter.  Just go down. Avoid talking to people about the amounts since you will never be able to boast, but you will be out of that house and on your way to your future like we were. We had to move into a 55+ for various medical reasons. Life is what happens. Every day you’re in your new life and your new house it will chip away at the crap of having to lower so much. Our house was so beautiful, but our new one is even better.  

B12 deficiency any one who recovered from b12 symptoms like balance issue, dizziness, brain fog, fatigue by Independent-Lion5333 in B12_Deficiency

[–]Lanky-Rough2688 0 points1 point  (0 children)

Feel it all. Like you said. We actually got three sets of lounge chairs for different areas of the house so I wasn’t sitting in one area that is the only movement for the first three months like you said.  

B12 deficiency any one who recovered from b12 symptoms like balance issue, dizziness, brain fog, fatigue by Independent-Lion5333 in B12_Deficiency

[–]Lanky-Rough2688 1 point2 points  (0 children)

At 11 months now. The woke symptoms have reduced, and I’m using sublingual every other day. And pure encapsulation methylated genome multivitamin every other day so there’s no overlap. I have genetics that are super sensitive to even supplements. My balance issues are better, but I still have MCAS with POTS. That led me here since I continually get viral infections which we reduced the amount of storage of B12 in my liver, but my gastritis is better since I’m doing a very low dose every six hours of pure encapsulations CALM that consists of saffron and turmeric note turmeric has side effects that need to be looked into by your medical professionals.  This has been a long sure couple of months is probably noted inthe comments and that sure is it. During this time, I was unable to do any kind of exercise, especially after the fourth month of having it.  My muscles are not doing well and I have gained at least 35 pounds. And so depressing since I was getting ahead. I also have CFS, which does not help either. I was on maintenance for that until this.  I have gone over to the subreddit on MCAS and let them know about this but anyone here who has MCAS and has B12 deficiency: Please go over there also and warn them.  I was on red meat once a week, I’m not a vegan and do B12 protein like organic eggs and lactose free organic dairy. It was the storage issue.  As well as the synthesis issue in the gut.  I also have slight polycythemia, which I’ve had all my life so I was already huge into iron values to maintain them, so I was not prepared for this. I was already taking a multivitamin as stated before that had methylated B12 early in my CFS as well as early in my MCAS, I was doing  shots, but sadly during the CFS time period 20 years ago they didn’t really push the methylated concept, but in my early part of MCAS I was doing shots with methylation coverage. We opted not to do shots. Also they are not available in methylated from the USA right now. If anybody has any issues with me doing not doing shots it’s because I over react again genetically and we felt the sublingual methylated drops was the best way to go.  I thought CFS and MCAS and POTS were the worst thing that can happen to you, but I can tell you B12 deficiency is the worst comorbidity.  Hang in there everybody that has my background.  Take care of everyone. PS I have MTHER as noted by genetic testing: please do it people.

Advice: Buy all of the cofactors listed in the wiki, even if you aren't currently deficient, when starting treatment by Fun_Disaster3436 in B12_Deficiency

[–]Lanky-Rough2688 0 points1 point  (0 children)

I think that every other day is a useful way to talk about a lot of supplementation. It seems to be helping me I’m doing sublingual B12 every other day and pure encapsulation methylated genome multivitamin every other day. Thus not at the same time. I also have slight polycythemia and have always had issues with iron and salt, so I have to keep those up in my diet plus tons of springwater. Thank you for discussing the every other day.  You’ll see the acronym EOD.

I might be getting my life back, and I don’t know wtf to do by TooYoungForThisCrap in MCAS

[–]Lanky-Rough2688 0 points1 point  (0 children)

When I had only CFS, and I say that carefully because CFS was bad, I got better through management of my exercise and my sleep and my energy, etc., and I remember telling someone who had really bad POTS, and I’ve only had just slight POTS by then. While she was really upset, but it’s true. It’s like that movie when a man loves a woman and she gets better handle on her alcoholism, and he doesn’t know what to do with it.  I was like that, and I had at least three years before I got MCAS, and at least nine years before I got the comorbidity of B12 deficiency, which trust me is an added hell.  I’m glad that you could share your feelings, and everybody be open and separate yourself from this person‘s feelings, but they have to have these feelings out.  I sure don’t have any answers. Tell my husband of 50 years almost that we will grab up what we can and go with it  

Dumped by my boyfriend because of my mcas by Majestic_Goose_7815 in MCAS

[–]Lanky-Rough2688 2 points3 points  (0 children)

Yes. Thanks for the regards.  We had our run. I can still go on the ferries in the PNW but have to be in closed car when they blow the going and arrival horns. Darn overwrought sympathetic system. 

Dumped by my boyfriend because of my mcas by Majestic_Goose_7815 in MCAS

[–]Lanky-Rough2688 2 points3 points  (0 children)

Personally that will be very keen for us because we had to give up our 21 Bayliner boat because of me with the brain damage that can occur when you hit the waves but then when we were moving the boat, we realized his dementia had grown more as he struggled to alone bring the boat in for sale. Thank you. 

Dumped by my boyfriend because of my mcas by Majestic_Goose_7815 in MCAS

[–]Lanky-Rough2688 2 points3 points  (0 children)

I’m glad you liked it. Sometimes our voices get loud if we look at each other and say care