LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter



Tax deductible

The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.
In the United States, your donations are tax deductible.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » General Support » MAST CELL ACTIVATION DISORDER (Page 1)

 - UBBFriend: Email this page to someone!   This topic comprises 3 pages: 1  2  3   
Author Topic: MAST CELL ACTIVATION DISORDER
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://www.healthrising.org/forums/resources/mast-cell-activation-disease-the-modern-epidemics-of-chronic-illness-afrin.338/

GREAT ARTICLE!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
So very helpful

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Glad you found it!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://www.corebrainjournal.com/2016/07/028-lawrence-afrin-mast-cell-activation-syndrome/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
WOW!!

https://drive.google.com/file/d/0BxK4lGunsmzgLXhrUk9NYVRHemc/view

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
MCAD activated by parasites?

https://rockonnutrition.me/2016/07/20/how-antiparasitic-treatment-cured-my-mast-cell-activation-disorder/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745

Icon 1 posted      Profile for bcb1200     Send New Private Message       Edit/Delete Post   Reply With Quote 
Question...why is this posted in General when it is a medical article?

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

Posts: 3078 | From Massachusetts | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
The rule is to post articles in General Support. QUESTIONS go in Medical.

I see the rationale to that, but sometimes disagree!!

We used to have people who would post 6-10 articles at once, then there was no room for questions that needed answering.

So ... everyone needs to remember that medical info can be found right here in General.

I posted this question in Medical back in April ..

"Could you possibly have MAST CELL ACTIVATION DISORDER?"

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/133927#000000

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Interesting stuff!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
https://rockonnutrition.me/2016/08/02/mast-cells-dont-go-crazy-for-no-reason-5-things-you-must-address-if-you-have-a-mast-cell-disorder/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thinking is similar to the other post with Dr K. Binders, detox, parasites and infections. Really great info!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://topsecrets.pw/struck-by-mast-cell-activation-syndrome-jennifer-credits-m-health-expert-with-saving-her-life/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Info to file away for future use TuTu.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
CBS mutation connection worth considering. You might also consider 23&me and Amy Yasko's info.

http://geneticgenie.org/all-mutations/

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5412 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've done the 23andme.. Have not plugged it in yet.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://topsecrets.pw/mast-cell-disease-when-your-immune-system-becomes-the-enemy/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great info Catgirl!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

Icon 1 posted      Profile for Catgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks akinwlf. Here is more info:

http://geneticgenie.org/blog/2013/01/31/mast-cell-activation-disorder-mcad-chronic-illness-and-its-role-in-methylation/

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5412 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
A natural herb that helps:

http://www.healinghistamine.com/science-backs-ayurvedic-herbs-antihistamine-properties/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great link TuTu!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
They stock it at my local health food store. Solaray brand, so heading there tomorrow to pick one up TuTu. Thanks.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hope it helps!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
To those who believe MCAD is rare, I would show them the last sentence of the abstract of this article, which reads:

"Mast cell activation disease is now appreciated to likely be considerably prevalent and thus should be considered routinely in the differential diagnosis of patients with chronic multisystem polymorbidity or patients in whom a definitively diagnosed major illness does not well account for the entirety of the patient's presentation."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Just found out today I definitely have MCAD due to very high levels of N Methyl histamine in my 24 hour urine test. Answers so many questions about my childhood fainting spells, etc. Nice to know what's going in my body.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am so glad you now KNOW! Are you still in shock? I was more shocked than I thought I would be.

I hope you can get on the Cromolyn.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
My histamine level was so high it surprised me. They told me it was over the phone but not the actual number results.

Was kinda shocking to hear the doc explain why he thought I had MCAD instead of other forms of Masto based on my test results and symptoms.

He went into a lot more detail about the disease and we talked about me going back to work, etc.

I'm giving Bacopa and activated Quercetin a shot hoping it'll give me similar results as the Cromolyn.

I'm still trying to come up with a battle plan for this one.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
http://ohtwist.com/what-is-mcad/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Excellent stuff TuTu!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
He pretty much describes MCAS right here in his article on MVP ... interesting!

http://drhoffman.com/article/mitral-valve-prolapse-3/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Think there's a link between MVP and MCAS? I went through all kinds of heart tests last December and January. Have the dizziness, heart pounding problem which oddly is becoming less frequent with my MCAS treatment. Go figure?!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
The Good, The Bad, The Ugly:

http://www.mastcellaware.com/mast-cells/about-mast-cells.html

AK... I know it does affect the heart... the high histamine foods, the salicylates (if you have that issue), etc.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mast Cell Disease 101

Good info ...


http://www.sneeze.com/allergy-resources/mast-cell-disease-101/

Great article for family and friends .. even for doctors.

[ 03-28-2017, 10:13 PM: Message edited by: Lymetoo ]

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
More great stuff!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
is this something drs believe in or is it like lyme????

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
SMART doctors believe in it. You DO have to find a well-educated allergist/immunologist. I understand that the younger doctors are the ones who know about it.

You can check your local allergy clinic's website to get a clue how they operate.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am so late to this party. Thank you so much tutu for spreading the word

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13638 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939

Icon 1 posted      Profile for Pocono Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well, I just took Claritin, Zyrtec, Singulair and Pepcid. Also 1/2 Xanax. The other meds. aren't at my disposal.

I'll try just about anything. [Smile]

Thanks for posting Lymetoo. I'd never heard of it.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1443 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yikes, Pocono. Don't overdo it.

Do the symptoms fit for you?

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939

Icon 1 posted      Profile for Pocono Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Many of the symptoms. I've tried so many things for allergies. Sublingual immunotherapy, allergy meds.(just not together like this), nasal sprays, sinus surgery under general anesthesia, two sinuplasty surgeries, LDA until it was no longer available,...

I can go on and on.
Docs won't do allergy shots due to risk of anaphylaxis. I doubt they'd help anyway.

This makes sense so worth a shot. And no shot needed. [Smile]

BTW, I never was bothered by allergies, if I had any, before Lyme.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1443 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939

Icon 1 posted      Profile for Pocono Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh. I forgot to add. The LLMD with the blog says he doesn't find it helpful to start with one and add as you go. Hope he's right.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1443 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I used to take allergy shots .. way back.

But now I have NO IgE allergies .. I just REACT to everything as if I had an allergy.

It's best to find an allergist who "gets it" .. If things get worse, you will have someone to turn to.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939

Icon 1 posted      Profile for Pocono Lyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would have done the shots. Sublingual was the next best thing. The only thing I could get.

My IgE is still high at 500 but down from nearly 2,000. Normal being less than 100. It has taken more than a decade though.

I've been to every allergist/immunologist in the area and a few out of the area including out of state.

All tried multiple approaches except one out of state. She said I had a lot of sinus inflammation and recommended I see her friend. A psychiatrist. She then said she'd have to check with the nurse to see if sublingual immunotherapy would be appropriate for me. hmm

Needless to say, I never took that wasted trip again.
Is there a way to find a good allergist versed in this?

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1443 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Go to your area's allergists' websites and see if they mention mast cell activation.

or .. go to "Mastocytosis and mast cell disorders -- integrative and holistic approach" .. on Facebook. They have a list of doctors in their files.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
MCAS, POTS, EDS

http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Can fluoroquinolones activate mast cells?

https://floxiehope.com/2015/10/01/can-fluoroquinolones-activate-mast-cells/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Interesting read TuTu. In my case I've had symptoms of MCAD long before I was diagnosed with Lyme or put on antibiotics. Nonetheless, scary that there is a link between the two.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I had a lot of problems crop up back in the early 90's. I kept getting bladder infections which were treated with Cipro several times.

Then I was diagnosed with IC. I had to quit teaching about 2 yrs after that.

My symptoms of MCAS have been around a long time though. It's hard to pinpoint exactly when.

I'm pretty sure I've had Lyme since I was a youngster. I was diagnosed with Lyme about 6 yrs after I quit teaching. I was only dxd because I found an LLMD by accident.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have MCAS, POTs (along with hypotension) and Ehlers Danlos Syndrome. Also have a severe form of Common Variable Immune Deficiency. My Geneticist says that they are all linked.

Looking back, I can trace all of the conditions with their associated symptoms to my early childhood. The POTs symptoms did not show up until after my Lyme infection at 21 years old.

Posts: 5223 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

Icon 1 posted      Profile for lpkayak     Send New Private Message       Edit/Delete Post   Reply With Quote 
wow. ive just spent lot of time here im not dx but am sure i have mcas

ROBIN!!! are you there? i seem to be able to control most sx with diet EXCEPT i cant control the sx i get from touching new furniture

it is becoming a major problem i have severe osteo arthritis requiring surgery and just went thru a cancer surgery that affected upper body i NEED a recliner type chair i can get comfortable in to sleep i cant get in and out of bed until shoulder is replaced and have ongoing back and knee arthritis

i bought and gave away two chairs in the last year after failing to get them to off gas enough that i could sit in them

i gueess i foolishly just bought another chair...i am desperate...knee cannot be scheduled for awhile and it is falling apart(literally) and i need to not stress it getting up and down so i really need a lift chair but a recliner i could raise up on a platform would work

i had no idea i had mcas until i bouthgt the first chair and my skin turned red and burned and i felt like i was burning fire when near it

the new chair is doing the same it didnt do it in store but wonce in my house it started

also...when the chair is placed next to laptop or plastic totes or papers the burning toxin or what ever it is moves to those things

i have bought clothes, plastic totes, furniture. metal shelves all with this burning toxin only i can feel

if the item has the burning toxin when i buy it i must throw out item i have tried all kinds of ways to wash it and none work

if the item seems to catch the toxin from the original one...i am able to wash it...there are many combos of what i must do...if anyone else is going thru this please let me know

there is a group of ppl dealing with this in a new facebook group call Hell Toxin...i might have to help you get in if you are interested let me know

this is like science fiction...i never thought i would be dealing with this crazy stuff

talk to me ROBIN...you are first ex lymie i have heard of dealing with the touch thing like me

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13638 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
me
Frequent Contributor (1K+ posts)
Member # 45475

Icon 1 posted      Profile for me     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here is some more info on Mast cell activation disorder. It seems many people with Lyme have mast cell activation disorder:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC96436/

http://www.mastcellaware.com/mast-cells/related-conditions.html

http://www.chronicpainpartners.com/when-food-allergies-are-actually-mast-cell-activation-syndrome/

--------------------
Just sharing my experiences, opinions, and what I've read and learned. Not medical advice.

Posts: 1431 | From USA | Registered: Mar 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Wikipedia info on MCAS:

https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sickofthepain
LymeNet Contributor
Member # 39579

Icon 1 posted      Profile for sickofthepain     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for sharing. I have been trying to get my dr to send me to someone who is more specialized

in mast cell. I think this is part of my issues. I don't know if the light, sound and smell sensitivities may come from that but I have read

about migraines being triggered by this which I also get. The migraine dr that I see only gives meds to help with pain but admitted that they do

not seek what causes them. Our university hospital won't see me because I have lyme attached to my name and won't look beyond that. I was doing honey

bee stings which may have triggered something awhile back(rash), not so pretty so staying clear of that right now.(was also on gabapentin at the time too for a few weeks) It seems that I have an

assortment of methylation issues like many on here and I was thrown into a group on livewello with mast cell so I guess I have that although I don't

know what the name of this gene is. I have been thinking about the methylation mutations too and think I probably got them from my mom's mom who

died of breast cancer at 54. My mom is not very well either. My grandma's siblings died of various things at a young age, two from hodgkins in their teens, one from ms in her late 20's and several from cancer.

I am still suffering with lung stuff as well and fatigue. So hoping that something will come up, the right avenue. One can only take so many

antibiotics and every time I get a test for bart or bab or many other coinfections,it's a dead end. I do think my genes are making things very difficult for me. My regular dr's nurse

recently prescribed a combo of allergy meds with zirtec and singulair. I also started taking a histamine supplement. I have taken just singulair

with no help from it but maybe the combo. That is what I have noticed with migraine stuff that helps. You have to take the combination of things

horrible for you but kill the pain, usually but not always.Have not wanted to even post because I am not any better over the past several years even

with lyme help and don't want to be a discouragement. I hope that I can have some good news to report in the future.

Posts: 294 | From southwest mi | Registered: Dec 2012  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'll PM you tomorrow.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
My third Allergist appointment was about 30 minutes long, which in normal people time is at least 2 hours! Dr explained things in more detail and answered all of my questions.

My 24 hour urine test was abnormally high. Most people don't have such high levels (mine was over 1000). Told today it was 7 times higher than the high normal.

Cromolyn Sodium is for those that have gut issues as a major complaint. Was told I could try it if I wanted but my issues are vascular because my main symptoms are dizziness, fainting, flushing, anxiety, etc.

Same for the DAO and being Asian didn't effect my histamine levels.

My own body is producing super high levels of histamine.

My diet isn't much of an issue but he did say to monitor what I'm eating and if I have a reaction to not eat that particular food for awhile.

For my type of MCAD he recommended that I avoid histamine releasers citrus, kiwi, pineapple, plums, cocoa and chocolate, nuts, papaya, beans and pulses, tomato and wheat germ.

Since starting my treatment I'm feeling better and have no dizziness or fainting.

Well, onward and forward!

[hi]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good! .. I'm glad he told you about the histamine releasers and explained things better. Thank goodness you don't need cromolyn (I hope) since it's awfully expensive without insurance.

So are your tryptase and prostaglandin levels OK?

[ 02-28-2017, 01:00 AM: Message edited by: Lymetoo ]

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
My tryptase and prostagladins were normal and he went into more detail about the ratio between those and my histamine level. He talked to me about mutations and things to be aware of in the future.

My list is dated 2007 so I need to check on releasers.

Oh, did I mention MCAD has an ICD 10 code as of October 2016.

Was told it will make diagnosis and treatment more available.

Yay!!!

[woohoo]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good .. I'm glad they are normal. It's good to have them checked if you ever end up in anaphylaxis.

I knew about the code.. thanks. We are grateful for that one!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mast cell activation syndromes: definition and classification

http://onlinelibrary.wiley.com/doi/10.1111/all.12126/full

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Quoted from a paper I read.....

"Once a year all the rare illnesses get their day of recognition on the last day of February. Rare diseases include any disease that effect fewer than 200,000 people, but collectively they are hardly rare.

According to the Rare Disease Day US website, 1 in 10 are diagnosed with a rare disease. Lumped into this category is the umbrella description of Mast Cell Activation Diseases (MCAD), which is what I would like to bring awareness to today.


Under the category of MCAD you will find Mastocytosis and Mast Cell Activation Syndrome (MCAS). These 2 illnesses are very related but different.

Mast cells are a type of white blood cell that release histamine, heparin, prostaglandin D2, tryptase, and other inflammatory immune responders. Under normal circumstances, mast cells support our immune system, but some individuals have mast cells that misbehave or are overproduced.

The release of the chemicals from the mast cell is called degranulation. When degranulation snowballs or the mast cell granules are “leaky”, too many of the inflammatory chemicals in the body can cause a whole host of symptoms and syndromes in multiple body systems that seem to be unrelated.

Before finding one of the few handfuls of doctors that understand this illness, sufferers go many years without answers, severe debilitation, and often poor treatment from medical professionals. The lucky ones are those who find an answer to this baffling condition.


Mastocytosis is extremely rare and it is where too many mast cells are made in the bone marrow. These individuals are at very high risk for anaphylaxis. Mast Cell Activation Syndrome (MCAS) is the other arm of MCAD and is much more common.

They make normal numbers of Mast Cells, but they are over-sensitive and behave badly. MCAD patients sometimes have idiopathic anaphylaxis and some have slow building sensitivities.

Every patient is different in presentation as they can affect every system in the body and they typically have normal lab results to everything, which is why these patients are dismissed by some doctors with psychosomaticism and treated as “crazy” by their peers.

Tryptase alone is not a good indicator of MCAS (only mastocytosis), although many are dismissed on this lab test alone as not having MCAS.
Dr. Lawrence Afrin, author of “Never Bet Against Occam”, says in his book “MCAS is a chameleon that confounds diagnostic testing and treatments for other diseases.” Even allergy testing results can change from one time to the next.

Symptoms are chronic and confounded by standard tests. Dr. Afrin cites epidemiology research suggesting 14-17% of the general population is affected. We don’t hear about it because it has been recognized only recently.

Dr. Afrin explains that if a patient has multiple system issues without any lab defining the causes, don’t bet against Occam’s razor, it is most likely one cause explaining the complex patient."

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Personal experience of someone with MCAD and another rare disease.

The part about MCAD is about 2 minutes in...

http://www.raredr.com/conferences/rdd2014/extra-adrenal-pheochromocytoma

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
WOW .. Still reviewing this one...

http://strengthflexibilityhealtheds.com/2015/09/03/diagnosing-mast-cell-activation-syndrome-mcas-post-1-of-4-in-series/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
This MIGHT be helpful for MCAD patients:

https://hscweb3.hsc.usf.edu/blog/2017/03/20/study-finds-new-medication-prevent-deadly-swelling-throat/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm allergic to everything I think. I can't take anything over the counter tho. I have high bp and that stuff sends me into bad heart palps and all.

so since I can't take any medicine for allergies what am I supposed to do?

even certain foods cause me to start sneezing and I can't stop.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
You can get those meds compounded, but you would need a willing physician to write the order.

Not being able to take anything over the counter is a big red flag.

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
can't take claritan, sineaid, any sinus, cold, allergy pills, sprays, capsules, nothing. sends my bp sky high with severe headaches, heart palps, short of breath. almost like a severe allergic reaction.

dr has told menever to take any otc medicine at all.
which means I have to see him for anything.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh, yuck. I was going to come back for clarification on WHY. I am sensitive to many medications due to the chemicals in them.

I would be quite miserable without allergy meds.

Maybe you could try natural things like nettle tea for the anti-histamine effects?

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
A GREAT LIST OF RESOURCES!!

http://ohtwist.com/what-is-mcad/mcad-resources/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
When to Suspect MCAD.

http://ohtwist.com/what-is-mcad/when-to-suspect-mcad/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Putting this one on here again, so I can find it more easily.

Mast Cell Disease 101

http://www.sneeze.com/allergy-resources/mast-cell-disease-101/

When to Suspect MCAD.

http://ohtwist.com/what-is-mcad/when-to-suspect-mcad/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 1 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great info with links!

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank God for the ICD-10 code for MCAS/MCAD! My allergist doubled my antihistamine and instead of $80 it was $4 and change!

You know TuTu I was rereading the post about Jennifer who was put on Gleevec. Her histamine level was high like mine and that's what helped her health the most.

Wonder if anyone here has tried it?

[confused]

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would ask about it on the Mastocytosis group .. aren't you on there? I know Gleevec has been discussed.

I didn't know the code helped us with medications? Pretty super!

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Scary:

http://www.thedoctorstv.com/articles/2944-woman-allergic-to-the-world

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Great practical info on MCAS from a mom. Includes a recipe for safe soap.

https://chemicalscausingchaos.wordpress.com/

--------------------
 -
oops!
--Lymetutu--
Opinions, not medical advice!

Posts: 93273 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
aklnwlf
Frequent Contributor (1K+ posts)
Member # 5960

Icon 6 posted      Profile for aklnwlf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Trying something new to fight degranulation. Course I'm no expert so just googling stuff and trying new things.

Bought loose, dried chamomile flower tops and dried oregano at my favorite health food store.

Chamomile has luteolin so I took a good healthy pinch and steeped for at least 20 minutes in 3\4 cup of hot water. Chugged that down and plan on seasoning my food with the oregano, also high in luteolin.

I know there's supplements that people are buying but there kinda pricey so I'm going the cheap route.

Loose chamomile and oregano were dirt cheap, both for about $2.00. Chamomile will last at least a week and oregano at least 2-3 weeks.

I'll let you all know if it helps with my symptoms.

--------------------
Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

Posts: 4199 | From Columbus, GA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
  This topic comprises 3 pages: 1  2  3   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

© 1993-2017 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to the Terms and Conditions.

Powered by UBB.classic™ 6.7.3


Home | Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Webmaster