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Dr's Schwartz or Afrin-my thoughts (Read 13259 times)
kimtg68
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Dr's Schwartz or Afrin-my thoughts
06/11/11 at 02:02:40
 
I wanted to post my experience and thoughts about deciding which doctor I will go with and then how helpful (or not) the doctor I decide to go with is so others faced with this choice can possible use my experience to help them decide.

I started by emailing each, Dr Schwartz in Richmond, VA and Dr Afrin in Charleston, SC. Within 24 hours I received responses from both doctors. My email to them was identical listing my symptoms, what I've been tested for and ruled out as well as what I have been diagnosed with.

Dr Schwartz responded with: "Have you had tryptase levels measured in samples of serum collected at baseline and shortly after an acute systemic event?  If not, I would recommend this be done to look for mast cell involvement in your condition prior to us deciding whether it would be fruitful for you to see me."

Dr Afrin responded with: "I'm sorry to hear of your illness.

Your spectrum of symptoms is fairly classic for a mast cell disorder of some sort.  It's highly unlikely you have all the diagnoses you mention as problems independent of one another; it's far more likely you have just one problem which is biologically capable of causing all of your symptoms and diagnoses, and the only problem I know of which can explain the entirety of the specific array of symptoms you've listed is mast cell disease.

Probably the easiest way to start, diagnostically speaking, is to have your gastroenterologist or your family physician request the pathologist go back to the small bowel, colon, and rectal biopsies (yes, all of them, except for the gastric biopsy since that one was proven to be infected) and perform additional stains on them to evaluate for mast cell disease, since mast cell disease usually cannot be seen with the standard (hematoxylin and eosin, or H&E) stain used for GI tract biopsies.  Probably the most important stain to be done is CD117, but Giemsa, tryptase, and toluidine blue stains (and perhaps even CD25 and CD2 stains) might be helpful, too.  If the stains show mast cells are present, and if any areas are seen in which there are more than 20 mast cells per high power microscopic field, then that's abnormal (and the pathologist should go on at that point to send out the positive specimen for KIT-D816V mutation testing).  I long ago lost count of the number of patients whose old GI biopsies I've had revisited in this manner to useful diagnostic effect.  Your physicians, especially the pathologist, need to be aware that mast cells are highly "pleomorphic" (shape-changing) and can (and often do) misleadingly appear as lymphocytes, plasma cells, macrophages, histiocytes, or spindle cells on H&E staining.  Given the (very important!) context provided by your clinical history, there is a good chance that significant subsets of the lymphocytes and plasma cells interpreted as "microscopic colitis" and "lymphoplasmacytic infiltrate" in your GI biopsies actually are mast cells, not lymphocytes or plasma cells.

I would not have the gastric biopsies re-examined.  Infection often (normally!) increases mast cell presence in the infected tissue, so it's unknown what normal vs. abnormal numbers of mast cells are in H. pylori-infected gastric tissue.  In other words, if more than 20 mast cells per high power field are found on special staining of the gastric tissue, it still would be unknown whether that's an abnormal number of mast cells given the co-presence of H. pylori.

On the other hand, if H. pylori has been eradicated, a fresh gastric biopsy could be obtained and could be accurately interpreted with respect to increased vs. normal numbers of mast cells, but there's no need to even contemplate such a procedure unless re-processing of the old biopsies comes up all negative.

Alternatively, you could have any of your physicians order a battery of mast cell mediator levels (e.g., serum tryptase, serum chromogranin A, (chilled) plasma histamine, (chilled) plasma prostaglandin D2, (chilled) urinary N-methylhistamine (24-hour collection preferred over a random collection), (chilled) urinary prostaglandin D2, (chilled/stat) plasma heparin) looking for evidence of the disease in the blood or urine, but that might quickly get more expensive than just doing one or more of the additional stains on the old biopsies.

Best of luck.  Your physicians are welcome to call me through my division office (XXX-XXX-XXXX) if I might be able to be of further help to them."

I feel that Afrin's response is more useful. So I'm going to go with him. I will keep you all updated as to how my experience with him turns out.

Kim
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Riverwn
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #1 - 06/11/11 at 07:44:43
 
Kim,
I so appreciate your opinion and the info you shared! Im really liking what Im seeing with Dr Afrin! Im seriously thinking that he may be THE answer for me too! Im in north Florida but I think travel as far as Charleston just might be do-able for me Smiley
Thankyou so much Hon!!
hugs
Ramona
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fuchsia1
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #2 - 06/11/11 at 09:57:33
 
Kim, thank you for posting your responses from the mast cell doctors.  I'm afraid I can't be of much help since I am so far undxed with this illness, but trying to figure out if I should pursue it.

But you may have been of help to me.  When the doctor mentioned the gi proceedures and how they may be checked with the different strains for mast cells, I thought to keep this in mind.  I have had both the endoscopy and colonoscopy with biopsy and been dxed with lyphocytic colitis.  

This knowledge of rechecking the boipsies may be of future use to me, so thank you very much.  Good luck in your pursuit to find answers.

Marie
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juliegee
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #3 - 06/11/11 at 15:05:42
 
I'm with Ramona- I think this may be the doc for me too. I've seen him be THAT helpful, kind and generous with everyone I know who's reached out to him for help.

Best of luck & keep us posted-

Julie
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Joan
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #4 - 06/12/11 at 11:13:41
 
Hi Kim,

Do the instructions for (chilled) etc. go with the test before or after the comma?
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #5 - 06/12/11 at 12:31:04
 
GO WITH DR. AFRIN!!!!  He is so wonderful.  I saw him a month ago and so did my friend that lives down here near me.  She loves him too.  Her name on here is Goldie something.  Anyway, I love him.  I emailed him yesterday about a question on my meds and he responded with an 8 paragraph email within an hour, on a Saturday.  GREAT doctor.  Wants to help me and he is extremely smart.  And I need that right now.
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kimtg68
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #6 - 06/13/11 at 13:46:59
 
Joan I believe(if I'm reading it correctly) the comma indicates the end of that listed test so the (chilled) is before the next test. At least that's how I would interperate it. Hope that helps.

Godsgal THANK YOU for sharing your experience with AFrin. That makes me feel a bit more optimistic!
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #7 - 06/20/11 at 11:46:55
 
Yes I saw Dr. Afrin as well and I was so happy Jared told me about him. I thought he was great I just wish I could move too Charlston so he can get me better, I wish more Dr's here in South Florida knew about this disease. ITs frustrating b/c he is so far away. But yu will love him and he told me the same thing about my endoscopy I had, I wish I had known then i could have had them stain it for mast cells but I had it done in OCT and they did not keep the specimin. Let us know how you like him.
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kimtg68
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #8 - 08/05/11 at 09:33:31
 
So Afrin gives me these wonderful instructions for testing/retesting and I really had to struggle to find a local doc to order these tests for me. I'm SO not kidding when I say struggle! Finally my family doc agrees to do it for me but he only orders the chilled plasma histamine, serum tryptase and the CD117. Two weeks later I call the lab to see if they have results( are you ready for this?) they inform me I need to come in for a blood draw ONLY for the chilled plasma histamine test. They didn't know what the serum tryptase was and the doctor at the lab is lying to me about the CD117. First she says she wants to wait to do the CD117 based on the results of the plasma histamine results. I told her there should be no waiting and all tests need to be done and that the doc actually said the most important of these tests is the CD117. She claims it won't be necessary to do it if I find my answers with the blood test. I continue to argue with her so then she changes her story claiming she needs another form from my doctor to proceed w/ the CD117 for insurance to cover it. Guess what? She had no clue that I had ALREADY called my insurance prior to this order of tests to be sure it was covered and any necessary steps needed!!! HA! caught her off guard. So then she takes another turn in her story and talks of how she can't do the test and I said I already checked that too and I know she has to send it off to Birmingham to be done. She eventually said she was just going to wait for the results from bloood work and hung up. I drove to the lab which is 45 minutes from me and she refused to see me. I'm ticked off and rolling up my sleeves for a fight if she makes it that way. She has NO right to think she can decide to or not to perform tests ordered by a physician! I mean really! There are no obstacles insurance wise. I'm getting mad all over again just posting this!
I'm sharing this to show those out there that getting diagnosed can require some true standing up for your rights. I will succeed in this but will have to go through a bit of a struggle to get it. BUT it will be worth it!!!  I'll keep you posted on how it works out.
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #9 - 08/05/11 at 12:07:18
 
Kim,

I hear you!!!!  I have had a frustrating day in regards to tests/docs as well!  Keep on it!

Kate
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kimtg68
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #10 - 08/05/11 at 14:10:18
 
Kate, feel like venting or sharing? I'm all ears.
Kim
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #11 - 08/05/11 at 17:36:47
 
I have never heard of anything like this happening at a lab. Why type lab did you go to? Typically one just goes to a lab which has a nurse who draws the blood for the tests on the doctor's order. There is no change of speaking with the people who actually run the tests. Do you have a different lab you could try?
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kimtg68
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #12 - 08/06/11 at 02:32:21
 
Oh  believe me when I say IF I could go to another lab I most certainly would at this point. I'm shocked and amazed and infuriated that this is happening. This is the lab that holds my biopsy samples taken a year and a half ago. I'm going to talk to my family doctormonday to see if he will step in and help. He's a nice man but is quiet and I'm going to be honest he doesn't seem too aggressive. He's been great to me but let's ME do the leg work, research and pushing. So I'm not sure how much help he will be. I'm prepared to go to the hospital administration or wherever I can get help with this. I do not know the laws however it seems to me this doc legally has overstepped her authority.
I know not everyone has the same religious beliefs but I think God is trying to teach me to speak out and stand up for myself so I will take this lesson and do my best to handle it with a heart like Jesus; firmly yet lovingly. I was all angry before and now with some time to ponder it, I am calmer.
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #13 - 08/07/11 at 10:23:10
 
Kim,

I am over my stress now, but thanks.  I went and got all my blood drawn yesterday (9 tubes), almost passed out, but they were super nice to me!

Sorry to hear your lab isn't very cooperative.

Kate

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kimtg68
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Re: Dr's Schwartz or Afrin-my thoughts
Reply #14 - 08/07/11 at 11:53:01
 
Glad to hear your stress is gone now!
Take care.

Kim
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