"While it is an immune disease, it is not technically autoimmune. It can occur secondary to autoimmune disease or falsely elevate autoantibody levels, but MCAS is not technically autoimmune as there are no antibodies directed at the mast cells.
I generally describe it has an overactive immune system that causes mast cells to be trigger happy increasing the histamine load which causes the body to act as if it is allergic to almost everything even when not truly allergic to a substance."
"This is a GREAT explanation, thank you. I have a hard time explaining how I can have MCAS and immunodeficiency. I guess MCAS is allergic immune responses and immunodeficiency is bacterial/virus responses. To be honest, I still don't understand. But it is in Dr Afrin ' s book about it being a possibility."
"I tell people my husbands mast cells are normal numbers, but they are dysfunctional. They release too much histamine which causes inflammation. With enough inflammation, it attacks organs and systems until they become dysfunctional or damage. My husband is MCAS.
I and our kids are SM. I explain it the same way except our bone marrow produces too much of the precursor to mast cells...we have too many mast cells."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I think it's working. I have had a little easier time eating more foods, but then I overdo it and have setbacks.
I have resigned myself to begin using an anti-histamine on a more regular basis. I feel so much better when I take them, but I really don't want to take them!!
Thanks for asking. I hope that if this is an issue for you that you will be able to find someone to help you.
The cromolyn can take up to 6 months to kick in and I'm only beginning month 3 now.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
LymeToo, This might seem off-the-wall and totally unrelated, but in our experience, our daughter has often suffered from multiple food intolerances anytime that her mold allergies were out of control. We had a recent reminder of this after she moved to Houston 3 years ago.
I worried that she was having a Lyme relapse, but she insisted that it was inhalant allergies instead -- primarily molds and pollens in the warm, muggy Houston climate. She went back to her old AAEM allergist and he suggested mold allergy shots, which she agreed to.
It was like flipping a light switch. She walked into his office so ill that I had accompanied her for fear that she wouldn't be well enough to drive back home again in the metroplex traffic, but by the end of the day after he gave her a neutralizing dose of mold extracts, she felt 100% better almost instantaneously -- well, within 30 min.
I couldn't have imagined it, and I probably wouldn't have believed it if I hadn't been there in person to witness it. It made a tremendous difference in her appetite and in her ability to digest foods again -- immediate effects, too, because we went out to eat together at the end of the day, and she ate voraciously.
You live in an area that has had a lot of bad storms this spring, with possible flooding which can lead to both indoor and outdoor molds. Knowing as we do how great an impact mold allergies can have on the GI tract and on allergies in general, I would encourage you not to overlook the possibility that mold exposure could be at the very root of your mast cell activation.
Remember, molds produce mycotoxins, and toxins are at the very heart of mast cell activation, if I understand the theory behind it correctly. Furthermore, we swallow the mucus from inhalant allergies, and those toxins enter the GI tract and impact our gut flora, so this idea is not as far-fetched as it might seem at first glance.
The best allergists for treating this are members of the AAEM (American Academy of Environmental Allergy), in our opinion. They do the old-fashioned skin testing called "provocative neutralization" (PN), and in our experience, it is the very best testing technique for treating mold allergies effectively.
One way that it is different, and this is VERY important, is that each mold is tested separately, and then your personalized antigen extract is made up of these various components by a compounding pharmacy just for you. These are NOT stock mold mixes, which other allergists use.
You can be exquisitely sensitive to one or two particular molds, but much less sensitive to other molds in the same group. That's why they are tested separately so that the dosage for EACH mold is calibrated (if that's the right word) precisely into your compounded mold extract so that you are not over-treating one mold while under-treating another one.
This form of allergy testing is more costly than routine allergy testing because it is very labor-intensive and time-consuming, but it is the most cost-effective method of treatment, in our opinion, for molds and other inhalant allergens, such as dust mites and animal dander, etc.
There is an excellent AAEM allergist in your area who also treats Lyme disease. You probably know whom I'm thinking about. I would encourage you to consider this possibility because I know how much it has helped our daughter with her digestive issues and food intolerances. Feel free to PM me for more details, if needed.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.
Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.
Joe .. No, it takes several months for the cromolyn to work. I felt better in a few days though so I was encouraged by that!
Yes, to low blood pressure. Very common with MCAS, but I also take Verapamil for my heart.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
quote:Originally posted by Lymetoo: Thanks, TXLM .. I know I've had mold exposure but I think we are OK here. I tested for mold last year and nothing showed up.
Wouldn't SOMETHING have shown up on regular allergy testing? I've had it done twice in the past two years. Nada.
LymeToo, Check your PM for a more detailed response. For the sake of others who might be interested in an answer to your question, it all depends on what method of allergy testing was done?
For example, mainstream allergists often test for allergies in the blood, by the RAST method, which depends on IgE. But if you have low IgE, as some folks do, then you would get a "false negative" test result.
I don't want to bore everyone else with any more details than just this because I don't want to detract from the main theme of your topic. That's why I'm sending you a PM instead.
posted
Insurance pretty much covered it but unfortunately my insurance changes in a couple of months.
Is there a generic?
My stomach wasn't to bad today until I had some leftover veggies and I felt them.
I break into sweats after eating ,also gerd and congestion after eating,you?
Posts: 227 | From fairhaven ma | Registered: May 2015
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Cromolyn Sodium is the generic form of Gastrocrom.
It helps me greatly with the GI issues but is not a cure.
Be sure to take it at least 30 min before eating and on an empty stomach. You MUST do this consistently. If you skip doses, you won't see the positive results! I learned the hard way...
I still take Xyzal (RX new Zyrtec) twice daily, Pepcid twice daily, and 2mg Ketotifen compounded capsules twice daily.
The Ketotifen has helped the most as it is both an antihistamine and a mast cell stabilizer.
I still have significant symptoms. It would be nice if my doctor increased my dose of Ketotifen. Ideally, I would like to increase it until I could start dropping the RX H1 and H2 blockers.
If you are interested in Ketotifen, Infuserve America compounds the capsules with an RX. The pharmacists are super knowledgable and helpful. They have excellent competitive prices too, so no worries there! (My only wish is for my insurance to cover it!)
I try to avoid known triggers, including foods but that is hard. My symptoms are triggered after short bouts of activity (such as getting dressed and brushing teeth!), emotions, heat, and the biggest trigger seems to be Lyme and Co's (as I got reinfected last summer too).
For me, "trying" to avoid triggers is nearly impossible. I do my best. The medications help me to not react so strongly and inappropriately so often so I don't have to fear a bout of anaphylaxis.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I'm seriously considering trying MCAD treatment. The Cromolyn I was prescribed is inhaled via nebulizer 4x a day. Are the rest of you using an oral Cromolyn? I wonder if a nebulized version works faster or something...
Posts: 748 | From Texas | Registered: Feb 2015
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Just Silverwolfi here,
I got a reminder to check this thread again, Thank You <<<<< TXLM >>>>>!!!
And <<<<< Lymetoo, and each replier >>>>> for getting the info' links and thot's, where we can find them to do more research!!!
I'll be back in to read thru these links.
Jus' that Silverwolfi here.
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
Sick Sam .. I would think the nebulized version would be for asthma. The Cromolyn I get is in "ampules" .. they are mixed with water and I chug it down. Pretty tasteless. Four times a day.
Silver .. I hope you can find a way to get better!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I think it usually is for asthma, but this was prescribed along with a -bunch- of other stuff for MCAD by a LLMD who treats MCAD frequently. The 4x a day does match up with what you do, though. Maybe it's just another route of administration.
He prescribed this almost a year ago and I'm just now getting around to thinking about trying it. I've realized histamine and mast cells are probably a much bigger problem for me than I originally thought.
Posts: 748 | From Texas | Registered: Feb 2015
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posted
uuuugh,all the histamine food lists contradict.
What one do you follow?
Posts: 227 | From fairhaven ma | Registered: May 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Joe, you could try eating raw because in general it's lower histamine. Also take a couple antihistamines for the raw foods that aren't low histamine.
It could make all the difference, I think it's worth a try. This was my simplified way to go low histamine cause I was so frustrated with diet lists that contradicted each other.
posted
Sam.. The ampules are so the med gets into the gut. That helps prevent the mast cells from breaking down.
Everyone is sensitive to different things, so it's all trial and error.
Don't forget about Dr Afrin's book as being another great resource. It could be an eye-opener for you. If you tackle MCAS and Lyme at the same time you should recover more quickly!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thanks Lymetoo I sincerely think I'm gonna do this. After all this time I feel like I might be able to get a handle on this disease finally, if my heart can hold out a little longer.
"LymeMD" is who prescribed the nebulized Cromolyn for MCAD, and he says people respond quickly to it. I also read a case of MCAD causing pericarditis and Cromolyn helping, so I'm really hoping this will help my heart.
When I had a strong response to a histamine wheal during allergy testing I realized I had a histamine problem. Then I realized the reason my face stays swollen is because of histamine. I think treating MCAD and Lyme together will keep my body from making a bigger mess of itself when Lyme is killed!
Posts: 748 | From Texas | Registered: Feb 2015
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posted
Also, I'm NOT saying I recommend this, but I just want to put it out there for anyone that might get an "aha" moment from it...
LymeMD told me that benzos (like klonopin) can inhibit mast cell activation. Since I was taking a benzo at the time, I was told to break it up and take the pill throughout the day to inhibit the mast cells.
I don't like benzos, I'm off them now, but if you've been helped by a benzo perhaps it was doing more than just stabilizing your mood. Maybe, possibly, it could've been stabilizing your mast cells too. More info can be found using our friend Google.
Posts: 748 | From Texas | Registered: Feb 2015
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Lymetoo, looks like maybe you're right about the nebulized version:
From http://lymemd.blogspot.com/2015/06/mast-cell-activation-disorder-mcad-new.html?m=1 ---- "Cromolyn however, is the most effective mast cell stabilizer. Cromolyn is available in nasal in oral inhaled forms which may not be terribly effective. In my experience, Gastrocrom, the oral form, is very effective. Only a small percent is adsorbed systemically but this seems to be enough. The drug comes in a liquid form needs to be dosed 4 times per day. Two ampules or 10 cc works best." ----
So now I'm left wondering why I was prescribed the nebulized version. I'm sure there's a reason. So many questions...
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I really don't think it was a cost thing. He assumed insurance was covering everything, so he never really paid much attention to cost. So I really don't know...
Posts: 748 | From Texas | Registered: Feb 2015
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posted
I just found this case report. A woman with MCAD was on H1/H2 blockers and oral Cromolyn. She required the addition of nebulized Cromolyn for further improvement in fatigue and bone pain.
I'm still trying to put all the pieces together! Looks like the nebulized version does something at least.
Posts: 748 | From Texas | Registered: Feb 2015
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"It is poorly absorbed through all body surfaces apart from the bronchial mucosa where the entire drug reaching the bronchial mucosa after inhalation is absorbed."
That must be why she got better. I noticed it was the first time it was used for SM. Date was 2010.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Very interesting thread. Looking into this myself and trying to find a doctor that can provide a diagnosis.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
OK, have an appointment for the 20th with an allergist. Hope he's the right kind of doc. Talked briefly with office staff and they said he does treat MCAS. Fingers and toes crossed!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6918 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I trying to read all this , sorry if I missed this one, but has anyone tried taking NeuroProtek ?
how was it and whats the difference between the original and the low phenol?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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posted
The low phenol would be for those of us who are sensitive to salicylates. I'm still too chicken to try it. It's pretty expensive only to find out that one pill would make me ill for 48 hours.
I would suggest buying Dr Afrin's book and then get on one of the Mast Cell FB groups. They have lists of doctors who can help you.
It's like trying to find an LLMD, only worse. Hopefully, the news is spreading and more doctors are being educated.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I probably have this, since I react to everything.
But I find it interesting that lone star ticks can cause red meat allergies. I'm betting we become allergic to way more things than just red meat after being bitten by a lone star tick.
Maybe being bitten by a lone star tick plays a part in abnormal histamine reactions.
posted
---and lucky me, I've probably been bitten by about 100 of them .. at least.
We grew up going to our cabin in the woods and got tick bites every weekend. We had no clue they could be dangerous back in the 50's and 60's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
My hand is up. I'm fighting chronic Cpn -> infection triggered asthma (IgE to Cpn is up.)
Cpn and Bb both trigger H2R. Remember Tritec?
Neutrophils release histamine and mast cell degranulation -> histamine release.
MANY foods are high in histamine which is harmful to a fetus, so pregnant mom's Cu DAO enzyme soars.
Look at the eating for your blood type diet...what you shouldn't be eating, but love.
There's an alternative...taking the lectin (a protein) blocker for your blood type (before a meal) and daily prebiotics and probiotics as well as a daily vit. supp.
Far easier for me (B+) than giving up chicken and corn...This is what I ordered to try:
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