working with Harvard medical center!

[Hoping]

Hey everyone,
I'm a current student at Harvard, and have been working with a team of doctors here to try and map out a treatment. I recently sat down with my allergist and discussed Waldinger's papers and the allergy theory. He was really excited about it and very receptive to the idea (always a plus to get some positive feedback in the medical community!). He's been in touch with a number of his colleagues about the condition. He's interested in exploring the allergy theory but also doing some hormonal testing, blood work, etc. to rule out other options. He's referred me to Dr. Aidan Long, an allergist at Massachusetts General Hospital, who will be conducting the testing. I haven't met with Dr. Long yet, but I hope to in the next week or so.

I just wanted to spread the word. It's helpful to know that we're getting somewhere, and Harvard isn't a bad place to start!

Is anyone in the Boston area and interested in also visiting with Dr. Long? Please let me know. I may ask him if he's interested in doing a case study of a group of us. I can't promise anything, but it's definitely something I'll propose to him.

Keep fighting the good fight everyone!

[Ccconfucius]

very very nice. 

[amijgoro]

That's excellent!

[kurtosis]

You should contact JFerr. From what I remember he lives in Massachusetts.

[mellivora]

Well done Hoping! Its great that you're tackling this head on and that there are people listening to you in Harvard - great for you and, thank you because it can only be good for all of us and future sufferers to have this increased awareness amongst some doctors there. Keep us posted!

[demografx]

GREAT GOING, HOPING!!!!!!

[Nightingale]

I've always been hoping (ironic?) we would find some naturally curious people, like someone who would work at an institution like Harvard U., who would realize the amazing enigma our disease presents and see it as an opportunity to understand ourselves better.

Also, now being aware of having a brilliant statistician (kurtosis),  a Harvard student, a the relatively high level of discourse we have on our discussion boards, plus me ( ) I wonder if high intelligence is an indicator for POIS?

[Ccconfucius]

Not sure if high intelligence has anything to do with pois. Going on peoples claims we have had some pretty smart people with pois.

[Stef]

Hey everyone,
I'm a current student at Harvard, and have been working with a team of doctors here to try and map out a treatment. I recently sat down with my allergist and discussed Waldinger's papers and the allergy theory. He was really excited about it and very receptive to the idea (always a plus to get some positive feedback in the medical community!). He's been in touch with a number of his colleagues about the condition. He's interested in exploring the allergy theory but also doing some hormonal testing, blood work, etc. to rule out other options. He's referred me to Dr. Aidan Long, an allergist at Massachusetts General Hospital, who will be conducting the testing. I haven't met with Dr. Long yet, but I hope to in the next week or so.

I just wanted to spread the word. It's helpful to know that we're getting somewhere, and Harvard isn't a bad place to start!

Is anyone in the Boston area and interested in also visiting with Dr. Long? Please let me know. I may ask him if he's interested in doing a case study of a group of us. I can't promise anything, but it's definitely something I'll propose to him.


Keep fighting the good fight everyone!

Hi Hoping!

How terrific!!!!! POIS is now known in what may be the most famous university in the world!!

If Dr. Long and his colleagues are interested in doing some type of case study -- they may be able to accept specimens from those of you from other states in the US -- and even from overseas. So everyone -- there's a chance of your specimens being included if this comes to pass.

What better motivation could there be for you all to support your research grant??? Whether it's the ivory towers of Harvard or the local junior college -- funds will be needed to do an in-depth study.

Wonderful news, Hoping!  You've brought some realistic optimism to your POIS comrades!! 

Your name fits you perfectly. :-)

Stef





 

[Egordon]

Great news, Hoping! I'm currently a grad student at Berkeley and approached University doctors in hopes of receiving a similar response but was simply referred to a non-research physician. (I suspect because of our insurance plan.) So two cheers for private schools, i guess!

[kurtosis]

That's fantastic news. Good for you.

[Ccconfucius]

how the hell are you guys going to graduate school with pois.
i am barely surving through undergraduate.
Dont you have to spend hours and hours everyday to get things done.
I dont see how you can focus that long with pois.
I did a literature review this summer and i had problems with it because it required hours of reading, i cant imagine graduate school at Berkeley and Harvard.

Once more i am asking for your strategies.

[Hoping]

how the hell are you guys going to graduate school with pois.
i am barely surving through undergraduate.
Dont you have to spend hours and hours everyday to get things done.
I dont see how you can focus that long with pois.
I did a literature review this summer and i had problems with it because it required hours of reading, i cant imagine graduate school at Berkeley and Harvard.

Once more i am asking for your strategies.

Avoiding O and getting plenty of sleep have been really helpful. Knowing my limits has been good. If I'm exhausted with POIS and struggling to get some homework done, I let myself go to bed and wake up early to give it another go. I've noticed two things about my POIS in the mornings: (1) upon first opening my eyes, I'm usually exhausted and experience inflammation. It's hard to get out of bed. (2) once I DO get out bed, symptoms tend to be fairly mild for the first couple hours of the day. I try to take advantage of that and be most productive in the mornings. Sometimes easier said than done.

[kurtosis]

how the hell are you guys going to graduate school with pois.
i am barely surving through undergraduate.
Dont you have to spend hours and hours everyday to get things done.
I dont see how you can focus that long with pois.
I did a literature review this summer and i had problems with it because it required hours of reading, i cant imagine graduate school at Berkeley and Harvard.

Once more i am asking for your strategies.

Avoiding O and getting plenty of sleep have been really helpful. Knowing my limits has been good. If I'm exhausted with POIS and struggling to get some homework done, I let myself go to bed and wake up early to give it another go. I've noticed two things about my POIS in the mornings: (1) upon first opening my eyes, I'm usually exhausted and experience inflammation. It's hard to get out of bed. (2) once I DO get out bed, symptoms tend to be fairly mild for the first couple hours of the day. I try to take advantage of that and be most productive in the mornings. Sometimes easier said than done.

I actually found that study was easier later on in the day. When I was finished by grad school exams I changed my schedule to getting in at about 11:00 and working until 9 or 10pm every night, sometimes later. Not very social but in the IT industry it wouldn't be considered extremely unusual.

Grad school was a combination of abstinence, >80% cocoa chocolate and energy drinks. I finished my thesis a year into the course and actually graduated a year earlier than I was supposed to. At the time people thought it was a great achievement (if a little odd) but I just needed to get it done with so I could have an O without the pressure of wondering whether it was going to screw up my performance on an exam or a research presentation.

Ah the life of a POIS sufferer It would have been so nice to experience college without POIS.

[Egordon]

Hmm. My undergraduate experience was a great deal like yours -- I had to work twice as hard (and twice as long) as students without disabilities to get my desired result; the presentations I made were labored and awkward; and social relations were difficult at times (although that may have just been because of youth).  Had I known what I know now, though, things would've been much easier. When I was in undergrad I didn't even know that POIS existed, let alone that I had it. And i certainly didn't know of any of the treatments people on this board are using!  

I now have much of the information I need to manage my disease while pursuing my ambitions. Here's what I do to keep my symptoms in control:  

-desensitization shots at least once as week
-350mg of niacin pre-orgams, everytime
-200mg of Celebrex post O, as needed
-B-vitamins daily to improve energy, thought processes, and blood flow.

Oh, and being hyper-organized really helps! Especially when you're writing something. I would often outline things I was writing in outrageous detail (like, down to the sentence level) because I found it so difficult to remember things.
 

[0002ppdnuos]

It's very encouraging to hear that. Thank you Hoping for informing us about that.

[Hoping]

So.... I've got some bad news. Dr. Long said he heard about my case and wouldn't take me as a patient. My doctor at Harvard then referred me to Dr. John Costa at Brigham and Women's Hospital in Boston (its Harvard affiliated). I made the appointment ... and then they called me back the next day and cancelled it saying "Dr. Costa says he isn't the right physician for you." I can't tell you how pissed off I am!!!

Dr. Costa referred me to http://seminalplasmaallergy.org/ and to a guy named Dr. Jonathan Bernstein. He's done work on semen allergy, but it looks like he's based at the University of Cincinnati.... which is pretty freaking far from Boston!! At any rate, I may reach out to Bernstein and plead my case and see if he has any ideas or knows anyone I can see in Boston.

On a positive note, my doctor at Harvard medical center remains very supportive and is just as frustrated as I am at my string of bad luck. It feels nice to know a doctor that actually wants to make you better. I'll keep you all posted on my progress. Sorry to get your hopes up 

[demografx]

Hoping, I'm VERY sorry to hear of your frustration.

I experienced rejection for help at a major university here. I was fuming.

Happy to see you plugging away, moving forward!

My very best wishes for success. I know you'll find it. You are amazingly persistent.

Demo

[Limejuice]

Hoping,

Two years ago I sought Dr. Bernstein's help to diagnosis POIS using his seminal plasma allergy lab.  Unfortunately the test results were negative, and information about my experience with the procedure can be found on The Naked Scientists Forum (including the results with pictures of the gel electrophoresis - a control, my results, and a woman diagnosed with the allergy.  The method for the procedure can be found on his website that you referenced, and the cost was $2,000 out of pocket.  With lots of effort and bending of rules I was reimbursed by the insurance company.

If you approach him he may reference my case and results, but don't let that stop you...  He was initially skeptical about taking me as a patient but I convinced him to test me with some persistence.

I'd be happy to answer any questions you have.

[kurtosis]

I'm afraid you're bumping up against the professional skepticism of the medical profession. It's also possible that they see there's a public forum discussing the disease and treatment. it's possible they do not want the intrusion or 2nd guessing. Who knows. It's disappointing but there are a lot of medical researchers out there and we just need to get 1 good researcher interested in POIS.