Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness an

[justy]

Since you ask, Dr. Afrin, I think that in the case of ME it is triggered by an infection

Lyme is a known cause of activation of mast cells. I wonder if he talks about Lyme in the book at all.

I am old-school and do better with real paper books.

I prefer paper books too - but I cant read brand new ones due to the print off gassing something or other that I am sensitive to. And this book has only just come out, so fresh of the printing press! I prefer it if someone reads a new book first so all the pages get opened and aired, otherwise I will have to leave it in a quiet corner for at least 6 monhts to a year before I can read it. I only ever read week old newspapers as well.

I also wonder if he talks about EDS? there tends to be a predisposition in people with EDS III. I think looking back I can probabaly see warning signs in childhood also, but it didn't kick off for me until a couple of years ago - first three months of not being able to hardly breathe and having to stay in bed for three months because I couldn't walk or stand up and breathe, and steroids and asthma meds did nothing for it, then straight after this a dose of doxycycline kicked off the 24 hr a day itching...

 

[Sidereal]

When you buy a book that is on Kindle you just click to download Kindle to your computer--you don't have to have a separate device. It is free. Though I know you may want a paper version.

Or just download the free Kindle app for your iPhone and read all books on your phone. The fonts and background colour are adjustable and it's actually very easy to read books on your phone, I do it all the time.

 

[Mel9]

Symptoms of MC: Interview of 2 women by Dr. Theorharides for EDS group, June 2015

@taniaaust1 should see this

 

[Sasha]

@Taniaaust should see this

I think you mean @taniaaust1?

 

[792e31d6]

I am also a very slow metabolizer so I take much lower doses than my fellow sufferers on the Masto boards.

@Gingergrrl Could you post some links to the Masto boards? I'd like to send them along to my wife. Thanks.

 

[792e31d6]

I also wonder if he talks about EDS? there tends to be a predisposition in people with EDS III.

Yes he does. He devotes a few pages to it. It's a little long to quote the whole passage here.

There doesn't seem to be any reference to Lyme disease in the book.

 

[Gingergrrl]

@Gingergrrl Could you post some links to the Masto boards? I'd like to send them along to my wife. Thanks.

I'm not actually sure how to do that (or if I am allowed to?) since they are closed groups. They are on FB and I am not a member so I read them through my husband's account. He joined them for me to read but I honestly don't know how he did it and have zero knowledge of how FB works!

But if you google mastattack and Lisa Klimas you will find her blog and one of the groups is hers so it might explain how to join it?

 

[792e31d6]

I'm not actually sure how to do that (or if I am allowed to?) since they are closed groups. They are on FB and I am not a member so I read them through my husband's account. He joined them for me to read but I honestly don't know how he did it and have zero knowledge of how FB works!

But if you google mastattack and Lisa Klimas you will find her blog and one of the groups is hers so it might explain how to join it?

OK, got it. Thanks!

 

[Lynn]

I am about halfway through the book. It turns out that Dr. Afrin is practicing at the University of Minnesota now. Since I live 20 minutes from there, I decided to make an appointment. Unfortunately the first available is in May of 2017. Pretty long time to wait. But after over 20 years of illness, what's another year?

In the meantime, maybe I'll up my antihistamine intake.

Lynn

 

[justy]

This book is amazing. what a Dr! also to say, for anyone like me sensitive to new print and books - this book, although brand new doesn't smell of anything at all!

Im beginning to think mast cell could be the answer for A LOT of the people here...including myself

 

[Gingergrrl]

@Lynn that is awesome that you got an appt!

@justy I totally agree with you. I have not bought the book yet, and am working with local doctors, but totally agree that MCAS is behind a lot of our symptoms and is hugely related (at least in my case.)

ETA: Am having horrible MCAS reactions again to safe foods and am not sure why. Am trying everything within my power to not let it escalate to where I was last summer b/c I have a real chance in the upcoming months at a treatment that could help me and I cannot allow these reactions to have treatment denied or prevent me from getting to appts. I also am terrified of the EpiPen and still have never needed to use it and intend to keep it that way.

 

[actup]

On my own I started on anti histamines two years ago for what were documented mod to severe environmental allergies and more recent food sensitivities ( not allergies per testing). My body screams much less but still tired, tachy and short of breath with mild to moderate exertion. Flu like symptoms much better controlled. Am probably on the lower end of MCAD spectrum and titrate meds day by day depending on symptom severity. I try to avoid dry eye and mouth issues.

My primary doctor made it clear that no one in his clinic would take this possibility seriously in a CFS pt and discouraged workup. I take monteleukast, ranitidine, diphenhydramine and generic Claritin only as needed and primary is aware of this. Need workup to get a mast cell stabililizer.

Thanks 792e36... for book suggestion. Very timely.Will read.

 

[justy]

@Gingergrrl - so sorry to hear this. I hope it passes soon. The book is absolutely awesome - you will love it. It is easy to read, although a little large for bedbound patients to hold. The text is broken up into small chunks so its easy on the brain and eyes, it has no odour, and is very insightful.

One of my concerns is that if I DO have Lyme, then the heavy hitters that Dr Afrin uses are immune suppressors, which would be awful to take. On the other hand, if I don't really have a problem with Lyme, then surpassing the immune system might just get me well again...Dr Afrin finds that many of his patients don't do well just on antihistamines, he uses Imatinib on patients without the D816V c KIT mutation. Most Masto people have this mutation, but not so many with MCAS. he has patients who have been very sick, with multiple things wrong with them (like us) go back to being completely healthy - although he also admits to treatment failures.

I am sorely tempted to go all the way to the States to see him. But appts are a year ahead and being from UK I have to pay upfront...its expensive too.

 

[actup]

@Gingergrrl - so sorry to hear this. I hope it passes soon. The book is absolutely awesome - you will love it. It is easy to read, although a little large for bedbound patients to hold. The text is broken up into small chunks so its easy on the brain and eyes, it has no odour, and is very insightful.

One of my concerns is that if I DO have Lyme, then the heavy hitters that Dr Afrin uses are immune suppressors, which would be awful to take. On the other hand, if I don't really have a problem with Lyme, then surpassing the immune system might just get me well again...Dr Afrin finds that many of his patients don't do well just on antihistamines, he uses Imatinib on patients without the D816V c KIT mutation. Most Masto people have this mutation, but not so many with MCAS. he has patients who have been very sick, with multiple things wrong with them (like us) go back to being completely healthy - although he also admits to treatment failures.

I am sorely tempted to go all the way to the States to see him. But appts are a year ahead and being from UK I have to pay upfront...its expensive too.

Justy, thanks for this additional info re: anti histamines only regimen. I have been busy with disabled son's health issues and some new ones of my own ( intermittent severe tachycardia and a fortunately early stage breast cancer) Put MCAD or MCAS workup on backburner but will f/u soon.

 

[Adster]

Just ordered the book - thanks for the heads up!

 

[Gingergrrl]

@Gingergrrl - so sorry to hear this. I hope it passes soon.

Thank you but so far it is not passing and getting worse. Am eating one meal per day of my very safest foods and have had to take the rescue med 3x/ this week. Am worried about it escalating where I will not be permitted to try a few treatments that could potentially help me.

The book is absolutely awesome - you will love it. It is easy to read, although a little large for bedbound patients to hold.

I struggle to hold anything that is even the slightest bit heavy as my arm muscles are so weak and recently bought another book but it is too heavy to even remotely lift.

The text is broken up into small chunks so its easy on the brain and eyes, it has no odour, and is very insightful.

Unless it is pages of texts without a breaks, I am usually not bothered by this issue but a strong odor would bother me.

One of my concerns is that if I DO have Lyme, then the heavy hitters that Dr Afrin uses are immune suppressors, which would be awful to take. On the other hand, if I don't really have a problem with Lyme, then surpassing the immune system might just get me well again...

I have a similar concern re: these auto-antibodies that I have b/c one of them correlates pretty highly with small cell lung cancer so immunosuppressants could increase my cancer risk and would be a bad idea even though they could help the autoimmune part. Am leaning toward IVIG instead at this point but doubtful I would tolerate it MCAS-wise.

he uses Imatinib on patients without the D816V c KIT mutation.

I have no idea what that mutation is and have never been tested at that level (was tested for histamine, tryptase prostaglandins, etc.) Is Imatinib the same as Gleevec? ETA: I got the answer and it is Gleevec.

Most Masto people have this mutation, but not so many with MCAS.

Interesting. Can they do anything if you have this mutation or it is life-long and unfixable?

I am sorely tempted to go all the way to the States to see him. But appts are a year ahead and being from UK I have to pay upfront...its expensive too.

Since his next appts are not until mid 2017, I think you should book one and you can always cancel it later. At least give yourself the opportunity. I have done that before (although never for something out of state or country.)

 

[justy]

Since his next appts are not until mid 2017, I think you should book one and you can always cancel it later. At least give yourself the opportunity. I have done that before (although never for something out of state or country.)

The problem is you have to pay $1100 upfront - non refundable!! so if I make the apt I HAVE to go (and we have zero money right now...)

 

[Gingergrrl]

The problem is you have to pay $1100 upfront - non refundable!! so if I make the apt I HAVE to go (and we have zero money right now...)

Wow, that is insane and I did not know that part when I encouraged you to make the appt! If it was $1100 non-refundable and I had no idea if I would be well enough to travel to another country one year from now, I would not do this myself. I actually have never heard of such a thing and the closest I've had is when I've been told if I did not cancel an appt within 48 hours I would be charged the full price.

Do you think they would make an exception since you are coming from another country and let you book the appt and then when it gets closer, maybe give you a 2-3 week window to cancel without penalty? He has such a massive waiting list, it's not like the slot would ever go empty! Am not saying this as anything against him but this seems like a harsh policy for patients who are so ill!

 

[Lynn]

The problem is you have to pay $1100 upfront - non refundable!! so if I make the apt I HAVE to go (and we have zero money right now...)

@justy , I didn't have to put any money up front for the appointment. Nobody asked me for any money. I do have American insurance which they will take.

Lynn

 

[Gingergrrl]

I just ordered the paperback version of the book on Amazon Prime for $20 which seems really reasonable and it should arrive in two days. I was waiting b/c I had recently bought another book that I have not had time to even start but literally every single day friends are e-mailing telling me to order this book and how phenomenal it is and I realized that I really need to read it. So hoping to be able to discuss it with you guys soon!

My MCAS food reactions are completely inconsistent right now. They were horrible for several days in a row, then much better, and now tonight quite bad again. I think this was the final straw that prompted me to buy the book b/c even though my overall food med regime is quite good, maybe there is a way to make it even better.