I do feel better since going on cromolyn sodium last year.
I'll have to come back later to tell you about the testing. You can go to www.tmsforacure.org in the meantime.
Some use quercetin for the histamine. I can't take any of the natural stuff. There's also holy basil.
I had to find an allergist/immunologist who already knew about MCAD in order to get the testing. If the doctor doesn't know what he is doing and the lab is CLUELESS, the test will not show properly. (sound familiar?)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Hey Tutu. Thanks for your input and the links too.
I read all of Dr. Afrin's book, with many trips to the glossary! Found it interesting and see lots of crossover with Lyme+coinfections and our symptoms and MCAS.
Do you have ideas about why you can't take the natural stuff?
Quercetin was ok for me for three days. On the fourth day twenty minutes after taking it I got a screaming headache. And I never get headaches! So it was most definitely the quercetin.
Posts: 422 | From Luck home | Registered: Sep 2005
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Tutu. Does aspirin make your ears ring too? Or make you sweat? Those are my stx from it.
Posts: 422 | From Luck home | Registered: Sep 2005
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MJO, if you are around, just wondering if you pursued testing and with what type of practitioner? How are you doing?
Lymetoo, do you think lyme and coinfections caused you to have this? You are in remission form the tick-borne infections, right?
I was just diagnosed with MCAD clinically and my lyme doc recommended seeing an allergist. I get the impression though that a run of the mill allergist doesn't test or treat this?
Or do they?
MJO, hope you are feeling good these days. Thanks!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
Lymetoo, do you think lyme and coinfections caused you to have this? You are in remission form the tick-borne infections, right?
I was just diagnosed with MCAD clinically and my lyme doc recommended seeing an allergist. I get the impression though that a run of the mill allergist doesn't test or treat this?
Or do they?
[/QB]
- Yes.. but it's the chicken and egg thing.. which came first? I've had Lyme since I was about 8 yrs old so it's hard to say.
Remission from Lyme and babs .. yes.
Allergists who know how to do the testing for MCAD are rare. Sound familiar? Expect to be blown off or offered Xolair shots as your only option.
I refused the shots because I don't need more trouble. One day I may have to take them .. and MAYBE they will work.
I'm on cromolyn sodium as my mainstay. I also take Claritin and Pepcid as needed. I try not to take too much. I take Zyrtec when things are bad, but I don't feel well on it.
posted
Brussels, thank you for the comprehensive article which I skimmed but am going to read fully; great information!
Lymetoo, thank you for answering my question, I had a feeling this would be the case although I did read that there is now an insurance code for MCAD so maybe things will change down the road and it will be more widely treated in mainstream medicine.
Shots sound disastrous; there is bound to be some unwanted chemicals and preservatives in them.
Thanks Lymetoo and Brussels, I really appreciate the feedback!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Lymetoo, thank you for answering my question, I had a feeling this would be the case although I did read that there is now an insurance code for MCAD so maybe things will change down the road and it will be more widely treated in mainstream medicine.
Shots sound disastrous; there is bound to be some unwanted chemicals and preservatives in them.
-
Yes, on both counts. I think mainstream allergists would rather make their money on the shots. MCAD or MCAS is not very profitable for them.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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