Any Mast Cell patients here?

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Aerose91
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Date Joined Feb 2016
Total Posts : 538
   Posted 4/4/2018 7:46 PM (GMT -6)   
Im learning that the reason i made no progress on the Buhner herbs is because I have mast cell activation and the alcohol is what made me worse. My doc currently has me on a bunch of antihistamines and is thinking about a steroid soon. My tryptase came back normal so i guess i dont have MCAS per se, but i have secondary activation. Has anyone else been down this road?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 4/4/2018 8:07 PM (GMT -6)   
How was it determined you have it?

What tests were done? And any specific symptoms/reactions!

Will the steroid not cause the infections to grow due to your immune suppression?
Or.. is it necessary because your immune system is on overdrive?

Is it a LLMD treating you?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Aerose91
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Date Joined Feb 2016
Total Posts : 538
   Posted 4/4/2018 9:25 PM (GMT -6)   
Yes, I'm seeing Dr M in Bethesda. He's def well versed in MCAS but i had hoped that if u treat the infections, the mast cells would calm down. That may not be the case as the herbs may have cleared the bartonella, yet i saw zero improvement.
I am highly sensitive to environments, hence I've been living in a tent or in my car for 3 years. I also react to nearly everything i eat- sometimes even water. He used these and a bunch other symptoms to diagnose it. I don't know if I'm MCAS exactly, as my tryptase was normal, but i guess your mast cells can activate through other stimulus

WalkingbyFaith
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Date Joined Aug 2017
Total Posts : 1988
   Posted 4/4/2018 11:43 PM (GMT -6)   
Aerose,

My doctor did some tests on me related to histamine and mast cells. I have the results, but it didn't appear to be an issue as far as I could tell. I won't know for sure until I see the doctor on Friday. If I find out I do have an issue, I'll let you know.

Hope you can get some good help and relief in this area. I was on Dr. M.'s website the other day and saw their clinic now has a dedicated treatment for MCAS patients.

I do have a lot of sensitivities - mainly to mold and chemicals. Fragrance is the worst for me.

Has Dr. M ever mentioned anything about Bartonella specifically causing chemical or other sensitivities? I have suspected all along that Bartonella is the main cause of mine, but I suppose there's no way to know for sure. In BetterHealthGuy's notes from one of the Buhner conferences, he noted that Buhner said that bartonella especially can cause chemical sensitivities. When I asked my LLMD about it, she didn't agree with that. She thought mold exposure and parasites caused chemical sensitivities. (I'm not aware that I have a parasite issue. Tests were negative. I did have mold exposure.)

The reason I believe bartonella caused the sensitivities is because I've had signs and symptoms of bartonella since infancy/childhood. I had sensitivity to light, sound, smells, and touch all my life. It was always there but didn't become a problem until my chronic symptoms started in 2009. At that point, I had to go fragrance free, but I still wasn't debilitated by it. When my symptoms got dramatically worse in 2015/2016, that's when the chemical sensitivities became disabling and the mold sensitivities appeared. They still fluctuate in severity and get worse when I'm herxing. If the sensitivities had been caused by mold or parasites, they would not have been present lifelong IMO.

ArtAngel
Regular Member


Date Joined Mar 2016
Total Posts : 325
   Posted 4/4/2018 11:52 PM (GMT -6)   
I have allergies and lots of them.
Initially I couldnt take herbs......... everything was making me ill. I eliminated all the foods I was reacting too and my headaches went. When I found a very good kinesiologist he removed my allergies to salicylates and amines and suddenly I could take many more herbs it was amazing. I didn't have a lyme diagnosis at that time. I am in Australia naturopaths and even specialist I was going to told me lyme wasn't in here.
Later on when I got very electrosensitive and so ill I couldnt even live in my house it was a kinesiologist that balanced my energy and most of the EMF challenges went.
I havent been to any one about MCAS I am sure I have it, but the suggested herbs dont do much for me. It took me years to find a way to knock back the lyme. I have found that I can take extracts of TAO Samento powder, japanese knotweed and teasel root. I cant take the whole herbs or anything in alcohol or glycerine. So finally I can deal with the lyme. Up until now I have been struggling finding anything at all that would hit it. Oregano oil worked but I stated to get sensitive to it. ACS200 nano silver worked but you have to take a lot of this very pricey products and it is outside my budget.
I think doing Holosync has helped me. I never could relax - there is some PTSD from a harsh childhood. My mum was a drug addict and had mental health issues - she had had a very hard life. Holosync is a brainwave entrainment program of CDs. I think positive thinking and being able to find an inner peace contributes to healing. Its hard to do with lyme but over the many years I have been doing it I have noticed I can change my energy and get more relaxed when I never could before.

TrialbyLyme
Regular Member


Date Joined Oct 2015
Total Posts : 215
   Posted 4/5/2018 10:54 AM (GMT -6)   
I was just recently diagnosed with MCAS.There seems to be so much varied info out there about it, especially diet related. My doc said to stay away from amines, specifically tomatoes and red peppers? It's so frustrating. I was DX'd on symptoms alone for now. Rashes, reactions to everything, major chem sensitivities, wicked heartburn, etc. Even my cistus tea that I've been drinking for months made my throat bumpy and start to close up this morning.

Aerose91, could you email the name of the doc you are referring to?
“There are far, far better things ahead than any we leave behind.”- C.S. Lewis

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 538
   Posted 4/5/2018 11:17 AM (GMT -6)   
WalkingbyFaith said...
Aerose,

My doctor did some tests on me related to histamine and mast cells. I have the results, but it didn't appear to be an issue as far as I could tell. I won't know for sure until I see the doctor on Friday. If I find out I do have an issue, I'll let you know.

Hope you can get some good help and relief in this area. I was on Dr. M.'s website the other day and saw their clinic now has a dedicated treatment for MCAS patients.

I do have a lot of sensitivities - mainly to mold and chemicals. Fragrance is the worst for me.

Has Dr. M ever mentioned anything about Bartonella specifically causing chemical or other sensitivities? I have suspected all along that Bartonella is the main cause of mine, but I suppose there's no way to know for sure. In BetterHealthGuy's notes from one of the Buhner conferences, he noted that Buhner said that bartonella especially can cause chemical sensitivities. When I asked my LLMD about it, she didn't agree with that. She thought mold exposure and parasites caused chemical sensitivities. (I'm not aware that I have a parasite issue. Tests were negative. I did have mold exposure.)

The reason I believe bartonella caused the sensitivities is because I've had signs and symptoms of bartonella since infancy/childhood. I had sensitivity to light, sound, smells, and touch all my life. It was always there but didn't become a problem until my chronic symptoms started in 2009. At that point, I had to go fragrance free, but I still wasn't debilitated by it. When my symptoms got dramatically worse in 2015/2016, that's when the chemical sensitivities became disabling and the mold sensitivities appeared. They still fluctuate in severity and get worse when I'm herxing. If the sensitivities had been caused by mold or parasites, they would not have been present lifelong IMO.


Dr M didn't say much about bartonella being a specifically bad trigger, just that lyme (an umbrella term for all TBD) can activate mast cells. He was explaining to me that you can have something stimulate your mast cells without having mastocytosis, per se.
I used to have brutal chemical sensitivites in the beginning but i have helped that by living in good environments. As the weather and seasons change, i chase good air and that has kept me out of dire straights for a while

Ashp9790
New Member


Date Joined Apr 2018
Total Posts : 7
   Posted 4/5/2018 12:11 PM (GMT -6)   
Hi there

I am being worked up for mast cell right now
My LLMD thinks I have Lyme and bartonella ... my igenix test came back positive for band 41 and 31... I am going to talk to him about adding the test on to confirm a positive

I went to an allergist because I have been itching , rashes , flushing, etc
My food allergy test was fine bloodwork was fine , but they found histamine in my urine
Not super elevated just a little bit

I have to repeat the test again with more bloodwork

I am currently taking a histamine blocker I got from a holistic doctor along with antihistamines ... I am also eating a low histamine diet

It’s been very frustrating

If anyone else has tips on it let me know

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 4/5/2018 1:47 PM (GMT -6)   
Ashp9790 said...
Hi there

I am being worked up for mast cell right now
My LLMD thinks I have Lyme and bartonella ... my igenix test came back positive for band 41 and 31... I am going to talk to him about adding the test on to confirm a positive

I went to an allergist because I have been itching , rashes , flushing, etc
My food allergy test was fine bloodwork was fine , but they found histamine in my urine
Not super elevated just a little bit

I have to repeat the test again with more bloodwork

I am currently taking a histamine blocker I got from a holistic doctor along with antihistamines ... I am also eating a low histamine diet

It’s been very frustrating

If anyone else has tips on it let me know


Have the histamine blocker or the antihistamines helped your symptoms? If so, which ones are you taking?

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 538
   Posted 4/5/2018 1:48 PM (GMT -6)   
I feel like we're kind of on an island with this. Beyond avoiding triggers and antihistamines it doesn't seem like we can do much. I've been looking like hell for a recovery story but have yet to find one :/

BabsBunny
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Date Joined Mar 2017
Total Posts : 563
   Posted 4/6/2018 5:07 PM (GMT -6)   
My MCAS is suspected but mild. Just a lot of food sensitivities and feel sick around fragrances and chemicals. I was prescribed all kinds of antihistamines- H1, H2, MC stabilizer, etc etc.. but I react to the ingredients! So I am taking Quercetin, bromelain, nettle, and vitamin C, and using a low-histamine diet (I use SIGHI list but cross reference others). It’s restrictived since I can’t have dairy, gluten, corn, soy, sugar, butternut squash, coconut, peanuts, and discovering others. BUT I was able to stop taking Pepcid AC for reflux!
I itch less when I stay away from trigger foods.
No real way to tell progress other than that. Just have to feel better than I did a month ago.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

Aerose91
Veteran Member


Date Joined Feb 2016
Total Posts : 538
   Posted 4/6/2018 5:40 PM (GMT -6)   
Is secondary MCAS from an infection reversible when the infection is treated? I haven't heard very good things about long term outlook with mast cell activation
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