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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Mast Cell Disorder Doctors >> Dr. Jason Gotlib, Hematologist, Near San Francisco http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1346553268 Message started by Joan on 09/01/12 at 15:34:28

Title: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Joan on 09/01/12 at 15:34:28

Dr. Jason Gotlib is a hematologist who sees patients in the outpatient Hematology Clinic at Stanford University in Palo Alto, CA, just outside San Francisco. He sees both SM and MCAS patients and will see and diagnose new patients.

He's my doctor and was recommended to me by Dr. Akin in Boston. He's extremely knowledgeable, as well as very nice and straightforward. I've been there 3 times, and he always takes time to answer my questions and concerns.

If there is no prior diagnosis, a call should be made to his office to find out what medical records and/or tests are needed before an appointment can be made. He will review the records, and if it appears to be a mast cell or hematological problem, an appointment can be made with him.

Here are the phone and fax numbers for the Hematology Clinic:

Tel(650) 498-6000
Fax(650) 498-5030

His email is not for patient use.

Because this is a teaching clinic, expect to be seen by a Fellow or other first, and then Dr. Gotlib will come in to see you.

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Julie T on 09/02/12 at 08:09:35

does he see 16 year olds? He sounds amazing. Hope you had a great appt!

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Lisa on 09/02/12 at 09:47:40

This is really FANTASTIC NEWS!! Dr Golib is an excellent doctor and has an excellent reputation!! This is definitely the man to see on the West Coast!!!! If he is finally recognizing MCAS patients and accepting them then he is the man to go see west of the Mississippi!!!

Lisa
:D

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Joan on 09/03/12 at 16:43:38

Hi Julie,

I don't know, but his office will be able to tell you. If not, perhaps there's someone at the Packard Children's Hospital at Stanford who could see her first and refer her or consult with him.

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Maiysa on 12/23/12 at 08:33:06

HI-I have been in contact with Dr. Castells and she wants to see me. But it's such a long drive from Nevada to Bostson. I called Dr. Gotlib's office a few months ago, September and I was told by the nurse that he only sees aggressive cases of mastocytosis. So I am a bit confused. Will try this number again. I need a doctor who is closer. I had an appointment with Dr. Castells in October, but had a fever for three months and could not travel. I'm hoping this post is true that Dr. Gotlib will see me. I have been told by Dr. Castells that she is quite certain I have MCAS. Thanks for the post!!!
Maiysa

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by brigitte on 12/23/12 at 08:59:14

Hi Maiysa!! I live in Reno! Where in Nevada are you????

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Joan on 12/23/12 at 18:37:57

Maiysa,

When I saw Dr. Gotlib at the end of the summer, I specifically asked him if he knew any doctors in his area to diagnose and treat MCAS patients. He said there weren't any he knew, and that he had begun seeing them for that reason.

His nurse is Lenn Fechter, so you might ask for her, if that's not the person from your last call.

Good luck!

Joan

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by Maiysa on 01/02/13 at 06:19:07

Thank you so much Joan! I will try that number again. Brigitte, I'm more southern Nevada. May I ask who you see?

I am still trying to get in touch with Dr. Castells she has been in and out over the holiday, my local doc says he will only refer me to another doctor if she is on board. He said he wants me to see her. But I have to drive everywhere and it would take so long. :( Wish I could fly.

Happy New Year to All!!
Maiysa

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by IsItMCAD on 04/16/13 at 09:33:05

Joan what tests did he do on you? I saw him and was sure he'd say I had MCAD but he said the opposite, that I could have it but he thought it unlikely. He only did one test, a genetic test, that came out normal and said I could do a bone marrow biopsy but really there wasn't any real need.

When I read the symptoms on the suggested mast cell diagnosis criteria I have a lot of them, a main one being flushing and rhinitis after triggers. I also have POTS and other health issues that may relate. I also see that allergy medicine and h2 blockers help my symptoms dramatically so I thought that was also a sign that it could likely be MCAD. Any ideas from those more experienced?

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by lynda51 on 04/17/13 at 11:00:37

Hi Is It MCAD,

I am not sure how much experience I have, but I do have an opinion. Possibly because I have seen two excellent mast cell specialists. I know for a fact that the second specialist I had, most likely would NOT have given me the diagnosis of MCAS. Yet the first specialist did without hesitation. As of now, they BOTH confirm it. Does that even make sense?? ;)

Every mast cell doctor has a different approach and sometimes different "expectations" as to what is accepted for a diagnosis of MCAS and what is not. Remember too, that some are bound by the medical institutions they work for as well. That doesn't mean they don't follow the Criteria, but if you have read the Criteria itself, it is somewhat vague. And as you know it keeps changing. So doctors may even have different opinions as far as which mediators are accepted to make a diagnosis. (I believe it is only ONE marker now, but some doctors don't accept certain ones that ARE elevated). And because things are changing so fast in the mast cell world, that could change again next month! (That's a good thing). :)

When I went to Boston, my POTS was a significant reason why the GI mast cell doc sent me to the mast cell expert. IMO the two disorders seem to be one of the big interests in research out East.

If a diagnosis is really important to you, I would consider traveling to Charleston, SC and seeing Dr. Afrin. His approach is different and he practices at a University where he is not bound by specific guidelines. Now remember........this is my personal opinion and personal observations. And I am NOT perfect nor do I know all the "behind the scenes" information either!

Have you been on the dinet.org site and theelephantproject site?? These two sites may be a good place to get more information than I have to share. And also to ask for recommendations.

Hope this helps!

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by IsItMCAD on 06/18/13 at 10:15:58

lynda51 wrote on 04/17/13 at 11:00:37:

Hi, thank you. I will look at those sites. I have viewed dinet before but not lately. I seem to get my symptoms under control for a while then once they worsen it sets off a cascade and it gets hard to get it back on track. I do care about a diagnosis but much more than that I care about keeping my symptoms managed. I take allegra and zantac but it's not always doing the job. Unfortunately for now I won't be able to travel for a medical appointment but maybe someday. I thought maybe Stanford would be a great choice but it turned out not to be. I guess maybe I'll consider contacting Dr. Gotlieb again but I don't think it will be of much use probably. Do you know which main marker is the one they look at? Is there any more I can do over the counter to help myself. Allegra and zantac and trying to avoid triggers help, but it's not always enough. I'm in a bad pattern with my symptoms right now and it's been hard to get out of it.

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by lynda51 on 06/19/13 at 19:28:15

Hi IsItMCAD,

I am probably not the best person to ask about specific meds and what exactly to take to help you try to be "covered" in the best possible way. I have yet to establish an H1 blocker. :(

Did you look on the forum to see what most patients take on a regular basis? Are you taking enough blockers? I know some alternate allegra and zytec and that seems to work better. Do you use benedryl when your symptoms start to worsen? that will usually shut down a reaction before it gets too bad.

I used to think that I would "wait it out" so I didn't have to take so many meds. Now I know that at the first sign of trouble, I add extra dose of a med. So if I am getting dizzy or have a stomach ache, I will add an extra dose of Pepcid. If that doesn't shut down the reaction, then I will add another dose of medication that is in my regiment.

Some of us need mast cell stabilizers as well as H1 and H2 blockers because we seem to be more hypersensitive. You may fall into this category. I take both cromolyn and Ketotifen which are both stabilizers. Unfortunately they both require a prescription. But they surround the mast cell and prevent the release of many of the chemicals.....unlike the H1 and H2 where the chemicals are still being released but are being blocked from attaching to the receptors that cause us to react. so the chemicals are still being released only the symptoms are controlled.

If I were you, I would call Dr. Gotlieb's office back and tell them what you are experiencing....in detail! Write everything down and ask to talk to a triage nurse. Ask her what she recommends you do at this point. Be persistent! I know it is really hard when you feel so lousy, but it is critical to be your own best advocate. It is sad that that is the way it is, but we all seem to go through that until we get established somehow and somewhere!

Were you symptomatic when you were tested? I know my tests were normal the first time except for my heparin level (which some don't consider a marker). The second time I was tested, it was just for two things and they both came back normal. The third time was "the charm".... IMO it seems like elevated prostaglandins or histamines are important (like the N-methylhistamine test or the prostaglandin F2). Yet, I was diagnosed with just elevated heparin, a complete medical history and dermagraphism. The third time I had elevated prostaglandins, chromagranin A, heparin and also other irregular blood levels (like basophils and reactive lymps, etc.) If you could get a local doctor to test you when you feel you are at your "worst" maybe that would help. Or if you are in a crisis, have the ER do a tryptase and an N-methylhistamine test. Be sure and read when these should be done as the timing is important. It is within a specific period of time of when your reaction took place. It's just really hard to get a hospital to do these unless you have an order in place. That's because a local doctor has to be responsible for the test and results and reporting if something is positive. Do you have a local doctor that would help you?

What do you do when you are in a consistent pattern of symptoms? Are you sleeping and resting enough? what are you eating? Have you tried an Epsom salt bath? (no longer than 20 minutes!) Sometimes drinking warm water helps me and LOTS of it. Or sometimes I puree my food so my digestive system doesn't have to work so hard. For some of us, just digesting food stirs up our mast cells. ugh......it is sometimes difficult to figure out! Make sure you don't get too warm or too cold...this can set things off as well. Hope some of these suggestion might help.

Let me know how you are and I will try and answer any other questions you might have...and if I can't we will both holler for help from someone more experienced! OK?

take care......keep us posted. Hugs, Lynda

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by lynda51 on 06/19/13 at 19:31:01

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by lynda51 on 06/19/13 at 19:31:44

Sorry...posted twice!! ::) ::)

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by IsItMCAD on 06/21/13 at 10:26:30

Thanks Lynda. I talked to them again but all he's willing to do is a bone marrow biopsy and a blood histamine test. I'm not sure where else to go, wondering if there is another doctor on the West Coast I could try.

I don't do well on Benadryl but Allegra does help if I start getting symptoms. Zantac only seems to help me preventatively but not once symptoms kick in.

Do you get any side effects from cromolyn and Ketotifen? I'm not sure what type of doctor could prescribe these for me, any ideas? Could an allergist/immunolgist?

I was not symptomatic when tested? I don't think I ever had heparin tested, is that common for MCAD? I don't think he tested prostoglandins either for me. My local doctor said he just didn't know enough about this and to see a specialist, which I did but as you know, it didn't get me very far.

For me avoiding food triggers very strictly and increasing my allegra seems to help with I'm in a bad pattern. Rest too.

Thanks so much for your thoughts. Let me know if you have any more based on the above. Thank you!

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by brigitte on 06/22/13 at 09:56:02

Thanks for the info. I was about to start my paperwork process to see Dr. Gotlib, but it doesn't seem to be right option for me. I need a full MCAS work up. Sounds like his focus is mastocytosis which is great for masto patients on the west coast :).
I also got a fax from Dr. Castells office to start that paper work process as well. It says they need cofimaion of mastocytosis and a letter from a doctor confirming this. As I am a rouge person here with an autoimmune urticaria diagnosis only, but with all the symptoms of MCAS and no good doctor to help me get to the right place, it looks like Dr. Afrin is my guy ;), which is great! He's been the one to correspond with my via email and thinks through what I've told him that I do have MCAS (in fact he told me autoimmune urticaria and MCAS are basically the same thing). He is also willing to take me. No red tape. No doctor referrals.
It's going to cost me a lot of money, but in the long run, it will be totally worth it, I hope!
Once I get a firm diagnosis from him, maybe Dr. Gotlib would see me since its much closer to where I live.
So thanks for the info!!

Title: Re: Dr. Jason Gotlib, Hematologist, Near San Francisco
Post by lynda51 on 06/23/13 at 06:44:11

Hi IsItMCAD,

In my experience I have been told by my mast cell specialists that a bone marrow biopsy in NOT necessary unless you have had a tryptase level done and it is above 20 (or consistently above 20 as it can be elevated when we react). Or, the other possibility for needing a BMB would be if your c-kit is positive. The c-kit is a genetic test to determine if you have a certain gene mutation. But it is NOT a standard test for MCAD......a bone marrow biopsy tells if there is or is not an increase in mast cells. As MCAD patients, we do not have an increase in cells, we have hypersensitive mast cells.

The histamine test is one of the tests that a MCAD specialist would order.

I have two suggestions. I have a feeling that Dr. Afrin would contact your local doctor (if your doctor requests him to do so) and tell him which tests would need to be ordered for a "normal" mast cell work-up. Do you think your doctor at home that would do this for you? It does NOT have to be a hematologist or an allergist..it can be a PCP. Dr. Afrin works with my PCP and it works really well. Is that an option for you?

The second option I would consider is contacting a doctor by the name of Dr. Terry W. Chin. His name has been brought up several times on the NORD website and he is very well thought of. He is located at Millers Children's Hospital in Long Beach, CA. He is an allergist who specializes in masto and anaphylaxis. I would contact his office and at least find out if he sees MCAD patients. Although he is a pediatric allergist, he WILL work with adults too. I can find out more on NORD if you would like me to...just let me know.

As far as the Benadryl and your comment about not doing well on it...... Can you explain more? What happens when you take it? Have you tried different forms of the medication....and/or different brands. Sometimes there is something in a certain tablet or gel cap or liquid that is an ingredient that could be bothering you. If you have tried all forms and it causes you trouble I would check with your doctor and see what he thinks. Using extra allegra is exactly what you need to do!! And it sounds like you are doing a good job of avoiding your triggers....this to me is the key for getting this disorder under control....and getting rest is critical as well.

You asked about the Cromolyn and Ketotifen. Yes, I "had" side effects with both. But I am super super sensitive to any and all meds. I started my cromolyn with a couple drops in 16 oz. of water and only took a teaspoon once an hour. It took me a few months to work up to 6-7 vials which I now take. I do still get dizzy and tachy if I drink too much at once so I tend to sip it throughout the day. I recently added Ketotifen and started the same way....I reacted to two drops in 16 oz. of water so backed up to one and stayed there for a few days and now I take 7 drops twice a day....that is a little over 1/2 mL/mg. The Ketotifen is supposed to make you tired but in all honesty it makes me feel almost normal! It is by far the better med of the two (if you can tolerate it) and much, much less expensive.

I really encourage you to go back to your doctor and tell him/her that you are having a lot of trouble even getting into a specialist for help. Ask him if he would be willing to write Dr. Afrin and go from there. Or...check with Dr. Chin (sorry I don't have the contact no.)

Although a diagnosis is a good thing to have, IMO it doesn't 'solve' the problem we have...and that is THE TREATMENT. Much of what we experience as patients is to be our own best advocate and "teach" ourselves and our doctors what we can. I am sure you research constantly. If you are comfortable, I would bring any materials you have with you to your local doctor. They may not have an interest in learning about MCAD specifically but maybe they will at least read it and be willing to help you. OK?

hope this helps....hugs, Lynda

p.s. Some doctors use heparin as a marker...it seems to be an important one for Dr. Afrin. It isn't in the criteria list (I don't think anyway....someone correct me if I am wrong), but when Dr. Castells looked at my elevated markers, she verbally included it along with my other ones.