bensman

Hi Lyn, I am a patient of Dr. Afrin's. I traveled to see him last October and he confirmed my suspicion of MCAS. He was running about an hour and a half behind when I saw him, but he still spent well over an hour with me. I should have been better prepared with questions to ask at the end. He was pressed to get to his next patients. He ordered a slew of labs on me, which I had done the next day. I knew he wanted a 24 hour urine so I started collecting it he morning of my appointment so I didn't have to stay even longer. It's a much different appointment than I was used to and I finally felt like I wasn't completely off my rocker. He takes a blank piece of paper and starts going through a long list of symptoms/questions from his head (he is highly intelligent and very confident). I can't believe how many things he went through from his memory. He typed up a detailed 3 page report on me for my local doctors. Depending on how far away you live, he will probably require a local physician to work through. I live 12 hours from him, so finding a local doctor was a challenge. I totally understand why I need a local doctor, but it makes treatment more challenging. I have to contact my local doctor (who had never heard of MCAS before me, but is intrigued by it), she has to decide whether to contact Dr. Afrin or make a decision herself, then she has to get back with me. I wish I lived closer to Dr. Afrin so he could be in direct control of my care. But he is very gracious to give up time to speak with so many doctors while getting nothing in return. Be aware of this process if you decide to go and have a local doctor willing to work with Dr. Afrin. Currently I am in the midst of a bad flare, as they haven't found the right combination of meds for me yet. Dr. Afrin warns finding the right treatment plan can take a long time. But once it's found, most patients resume a somewhat normal life. Dr. Afrin is very passionate about this disease. He isn't a beat around the bush type of doctor. He gets to the point and says it like it is. He feels very strongly about his research and the havoc mast cells create in the body. I know Julie (Mack's Mom) was diagnosed by Dr. Castells. I hope this was helpful. Best of luck! Kate

I was just in the ER this weekend. I hadn't been there for about 7 years and won't be going back anytime soon. They do not understand my illness (POTS and MCAS) and look at me like I am a nut case. So unless I am bleeding to death, I told my husband not to take me back.

Good luck, Sue!

Julie ~ Not sure when you checked out the site, but I looked at it today and there were 2012 seminars. The at-home DVDs are a cheaper option. Jared ~ I am just trying to wrap my head around this. Do you think the program is basically helping you to manage your mast cell and dysautonomia better? Or do you feel it is retraining your brain where you will no longer need meds? Kate

Jared ~ I am so glad to hear you are feeling better!! Are you still taking the mast cell meds? How long have you been doing the program? Kate

Serbo ~ I would be interested in reading the article as well. Carol ~ I have stiff joints (except my digits on my left hand) and have a clinical diagnosis of some type of connective tissue disorder. I also highly suspect that my son (8 yo) has the same issues as me, especially when it comes to the mast cells. I am keeping a close eye on him. Dr. Afrin was not surprised at all when I told him about my son.

I don't have time to read the whole thread right now, but just wanted to say that at my appointment with Dr. Afrin I asked him if there was an autoimmune component to MCAS. I can't really remember everything he said (didn't have anyone with me for a 2nd set if ears), but he acknowledged there was. Next time I email him I could re-ask if you'd like me to. His responses are always detailed with great info. He did do more autoimmune testing with the rest of the tests he ran on me. Kate

I have been wondering about the tryptase levels as well. I have had mine tested 3 times. The first 2 times mine was a 4 with reference range of 2-10. The 3rd time (by my mast cell doc) it was a 6.2 with normal range of 0.4-10.9. But I always notice people posting about not having SM because their level isn't above 20. Maiysa ~ Even though my tryptase is "normal" I have MCAD. I flush quite often. I hope you can find a doctor close to you that is helpful. I ended up having to travel quite a distance to get proper testing and diagnosis. Best of luck. Kate

Adaptive PE is a physical education class based on the goals of your IEP. Since you will have it one-on-one, this could be a great benefit to you. I would definitely have the PE teacher consult with your doctor about what exercises/activities would be beneficial and appropriate for you. Hopefully you have a wonderful PE teacher who will work with you and your doctor. Best of luck, Kate

Dr. Grubb says I am hyper, but my blood pressure shifts low and high. I do have MCAD (high histamine level and heparin) and POTS (per TTT), but my angiotensin is low. My catecholamines are high on standing. It's all so confusing to me. I have not seen a neurologist, but probably should. Issie ~ I hope the new medication is helpful for you!

Hi Aunie, When you say your tryptase levels are positive, what do you mean? What is your level? Low tryptase does not rule out MCAD. I don't know any quality mast cell doctors in your area. I live in Ohio and traveled to South Carolina to see a mast cell specialist, Dr. Lawrence Afrin. But now he is working with my local physician to treat me. There are also specialists in Boston. I hope someone has a doctor closer that they can recommend for you. Kate

I have 5 lesions on my liver. CTScan showed fatty liver, but MRI did not. Both showed the lesions. My angiotension ii levels are low.

I haven't been able to get on recently, so I have missed this conversation. I tried the whole candida/gluten-free diet for 3 months this time last year. It was awful for me. At first I thought I was having the Herxheimer reaction, but it just continued on. I itched so badly, had terrible brain fog, and became so weak that I eventually gradually added gluten back in. I don't know if I didn't commit long enough, if I was eating something high in histamines, or if some other reaction was going on. I have no intentions of going totally gluten free again anytime soon. I have been tested for celiac and it was negative, but I thought I would try anyway. I agree, Julie, maybe it is something with our MCAS. Kate

Hi Bren, Do you live close to me? I am desperately looking for a good local internist!! That is so wonderful that you have found a doctor that is compassionate and thinks outside the box. I don't have much to add to Julie's post, but do want to reiterate to try to do your labs immediately after a flare. I know that is easier said than done, but it will give you a more accurate reading. Here are some of the labs a mast cell expert, Dr. Lawrence Afrin, ran on me. Serum Tryptase Plasma Histamine - prechilled tube and send on ice Plasma Prostaglandin D2 - prechilled tube and send on ice Plasma Heprin Level - prechilled tube and send on ice Chromogranin A Urine for Prostaglandin D2 - 24 hr urine - send on ice Urine for N Methyhistamine - 24 hr urine - send on ice Best of luck, Kate

Hi Ginger, When you say that you can't wake up what do you mean? When I was on Paxil I would fall into these deep sleeps (even during the day), that I felt like I couldn't wake up from. It was so bizarre. I would be asleep and wanted to wake up, but couldn't. Does that make sense? I am not sure if that's what you mean though. I did yawn a lot, too. I hope it gets better. Kate