-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
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."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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: 6410 | From Columbus, GA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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: 6410 | From Columbus, GA | Registered: Jul 2004
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I am so late to this party. Thank you so much tutu for spreading the word
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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.
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: 1445 | From Poconos, PA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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.
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: 1445 | From Poconos, PA | Registered: Jul 2004
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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: 1445 | From Poconos, PA | Registered: Jul 2004
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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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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: 1445 | From Poconos, PA | Registered: Jul 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
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: 6410 | From Columbus, GA | Registered: Jul 2004
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posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
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: 5237 | From here | Registered: Nov 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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: 13712 | From new england | Registered: Feb 2004
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Here is some more info on Mast cell activation disorder. It seems many people with Lyme have mast cell activation disorder:
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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