Help With Mcad, Plz!

[aunie]

So I really need a doctor to help me with MCAD/POTS. I go to Dallas, TX for many doctors visits so around that area is good. Does anyone know of any doctors familiar with MCAD and POTS in this area, if not the closest? I would even travel a ways away too. I am fairly sure that I suffer from some mast cell problems. I am incredibly sensitive and allergic to many, many things and they make the POTS crazy worse. I did see an Immunologist and he did a tryptase lvl and it was positive, but he says it's not high enough for any type of mast cell disorder. He will not refer me anywhere else, so I am at a dead end with him. I have had scratch testing and ended up passing out within a few minutes of applying the allergens. I could feel my body having a vaso-vagal response. It was instant. I was red and flushing. I was sick for days. This was all before we knew I had POTS, but now that we have been trying POTS meds, I have had no luck in tolerating any. The only thing my body is okay with is zyrtec once a day and my ativan at night to sleep. The only time I have ever had relief from my POTS symptoms was when I was given Kenalog injections for allergies. I was able to eat and walk again. Kenalog is not safe for long term treatment, so I need safer meds. I desperately need to find someone who can help me try to figure this out. My current POTS doc is great for POTS, but he's not so sure about the MCAD stuff. Any help from you guys would be a blessing. I really don't want to try an MCAD regimen blind, I really need a good doc.

[bensman]

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

[aunie]

Thanks Kate! I believe my level was a 14, plus I don't know if it matters, but I was still coming off of a dose of steroids, so it could possibly have masked it a little, or they could be higher now, I haven't had any steroids in a year. South Carolina is not out of the question. My mom lives in North Carolina and would be willing to take me wherever I need to go. I will try to find someone closer, but if not I may try that.

I am still doing research and trying to figure this all out. I feel overwhelmed at times with all the MCAD info and POTS too. I hope I can get this figured out soon. Thanks again!

Andrea

[POTSMama]

Andrea,

I can offer sympathy if misery likes company. After 20 years of POTS, suddenly I have developed MCAD (or perhaps it was the other way around and the symptoms have just gotten worse for the MCAD after an antibiotic reation). I am also at wits end trying to figure out who to see in Colorado. The regular allergist/immunologist I have been seeing knows nothing about POTS and apparently little about MCAD, and my regular doctor knows a lot about POTS but not MCAD (he's not sure he believes that's what I have, but I am sure of it and the allergist seems to think it's possible). So I made an appointment at National Jewish Hospital with a Dr. Weber for January 28, who Mack's mom mentioned, and then just got a call that he has broken his leg badly and can't see patients again until March! They said I'm first on the list to see him then, but that feels very far away as I am hardly able to eat anything, losing weight, miserable, and supposed to go back to my job on Dec 27 (I was on 3 weeks medical leave, working 1/2 time from home). I'd happily travel to Boston or North Carolina, but not sure my insurance will pay for it. Now I'm going to try the other doctor here she mentioned, and see if I can get in to see him sooner. Anyway, I feel for you and hope you find someone who will work well with you too!

Carol

[aunie]

Carol,

I totally get it! This doctor hopping is not fun, especially because nobody understands POts, let alone POTS and MCAD. I use to live in Utah and family is always wanting us to move back, but there just isn't enough doctors in that rocky mtn area. I live in northwestern Louisiana now and find it a little easier to find doctors in this area, or at least on the east coast. If I have to travel to South Carolina or Boston, it is doable. I hope things work out for you. Maybe your insurance would still pay for a visit, but it would be considered at an out-of-network rate. That's what mine usually does. I still get coverage just not as good, but it's worth it anyways to me. I will have to find the thread where Mack's mom mentions the doctor's. I know of one in South Carolina, but I am curious to hear of the others. Hang in there, many of us feel like we are always going up hill, instead of coasting down it. I know that I often feel like that. Do you take any anti-histamines now? I know for me when my allergist put me on zyrtec it made a difference. I am not on an MCAD regimen, but you could self medicating with some OTC zyrtec or allegra and see if that helps. I don't like to eat unless I am on the zyrtec. I'm hoping that after I get to see a doc, I can try the MCAD regimen, I think it will help, but I will be waiting for awhile too. I'm thinking that it will be March or so, before I will see anyone either.

Andrea