LYME SCI: MCAS, when the immune system goes haywire
We’re hearing from increasing numbers of Lyme patients who have suddenly developed serious allergic reactions to foods they used to be able to eat with no problem whatsoever. Many have learned that this can be a sign of Mast Cell Activation Syndrome (MCAS). Sometimes, the condition is referred to as Mast Cell Activation Disorder (MCAD).
So what exactly is MCAS, anyway? And what can be done about it?
Mast cells are part of the immune system and are present in nearly every tissue of the body. Their purpose is to signal when a toxin, infection or foreign invader has entered the body, so that the immune system can then launch the proper attack.
Do you have Lyme disease? Use our symptom checklist today.
When operating properly, mast cells are our friends. But when the system goes haywire and too many mast cells are triggered at once, this can result in massive inflammation that brings all kinds of problems.
Symptoms of MCAS can include skin rashes or hives, lip swelling, extremity swelling, itching, flushing, abdominal pain, digestive issues, nausea, diarrhea, asthma, heart palpitations, anxiety, depression, lack of concentration, low blood pressure, and fatigue.
In the following “Better Health Guy” video, Scott Forsgren interviews Dr. Jill Carnahan, who treats patients with MCAS in her functional medicine practice in Louisville, Colorado.
In addition to this MCAS, adrenal fatigue is a complication of TBD’s, and is also devastating and debilitating. If I cut out all grains, sugar, commercially grown to meats, and some foods that I’m allergic to, both of these issues cause fewer problems.
My MCAS is not allergic reactions to food but rather to touching materials, as I break out in rashes and hives upon touching regular materials. I did industrial chemicals testing (with Dr Howard Maibach in San Francisco) and found out I’m reacting to formaldehyde, which is in a lot of building materials and fabrics. So I’m limited to having very few clothes and using protective items to insulate me from touching things, like I ordered dark plastic bags from ULine that I found I can touch and I use Kirkland tissues to insulate me from everything. It’s a huge change to adapt to in terms of being in the world!! I hope one day research will help get the mast cell reaction down so we can have a more normal experience again. I vote for more mast cell reaction research!!!
Robin-what is the initial problem that triggered your allergies/sensitivities? I was in a bad car crash, didn’t recover/had severe pain & fatigue, chronic illness, so after 3 years, I was tested for Lyme. It was positive, but the 28 days of doxycycline didn’t cure it. It’s been a down hill run for 30 years. However, I keep researching and trying new things; diet, avoidance of triggers, de-stressing, which is a joke, with all the stress of this ridiculous disease. Don’t give up.
I use Scott brand facial and bathroom tissues with the least reaction. Thanks for mentioning Kirkland brand. I’ll give them a try.
This can get complex, if the person has high substance P levels it can resemble the symptoms of high histamines. With substance P the symptoms get worse at night.
Can you tell me where to find more info on substance P? My allergic symptoms do get worse at night.
Does anyone know if MCAS can cause multiple food sensitivities (not severe allergic reactions)? My husband continues to have chronic SIBO and over 20 food sensitivities despite over a year-long 4-day rotation diet with elimination of these foods. He has Lyme, +MTHFR.
yes it can
I have so many questions about MCAS! Is there a less severe version of MCAS? Can MCAS involve just behavioral issues, headaches and fatigue? Trying to figure out for my son who has been treated for Lyme but periodically has some issues that seem to be something other than Lyme.
Yes. The symptoms of MCAS are variable. Some patients have histamine intolerance versus a true mast cell disorder. I talk more about the spectrum of MCAS in my next couple of posts.
I don’t see how histamine intolerance would be a separate issue. Mast cells liberate histamine along with a lot of other immune mediators.
well, not sure if this is what you want to hear in the comments BUT I actually got lyme in 1991 from a spider bite who traveled on fabric from China which I happen to be working on in a Jacket Factory in Vernon, b.c. Found the picture on the China Lyme page! Not Canadian.
Went to lunch came back began to sew and saw the circle. It was Huge and very pretty and no big deal, just looks like maybe a spider bite so i carried on. Got sick in 2009 but since all this info is finally on the new I am able to see symptoms right from the beginning. I am now 77 and have had the bladder issue and a brain bleed and A Fib for the biggies and all kinds of other stupid issues. Nearing the end of my battle after 3 years and it was only 3 years ago I learned from a Naturopathic Dr, that I had it.
Please keep passing this information to us! Thank you!
Diane, could you tell us how your naturopathic doctor diagnosed you with Lyme?
Restore makes me react …….