I want to start this thread here in continuation of the situation that Gibby has been sharing with us.  Gibby, I don't feel it's necessary to go over anything we said on the other thread for you made yourself well understood and I'm understanding your grief.  I'm sorry if you feel that I misunderstood you.  I didn't sweety, I and do fully understand the frustration and the aggravation and grief that you feel at not having found any answers.  I've been there, done that and am still living it for yes, it's terribly hard work not only trying to find these answers, but to also live with it in the meantime!!   The reason why I came down a bit hard with you is because I realized that you were going off into the wrong direction thinking that you might having something that you don't only because those people who have suggested a hypersensitivity and then the mast cell disorder aren't understanding mast cells and mast cell disorders.  And as much as we want so much to help you, it would be wrong of us to take you in and welcome you as a masto patient just because we don't want to make you feel bad.  We would be misleading you as a patient group if we didn't stand up when patients come here looking for answers.  We've had to do this a few time with some patients because a mast cell disorder can be very confusing for patients and doctors and because most doctors don't know mast cell disorders, too many patients go around in circles for years and years and as Ramona said, an average of 9 to 11 years is what it takes for a masto patient to get diagnosed!!  We have people here who showed their disease in their 20s and only in their mid-40s found the answers!!!  Way, way too long, but this is what a rare disease is all about.

Now, I'm not dismissing at all any of your complaints or whether or not it's rare.  Please don't think this!  I'm not judging your situation for what it is, but only for what it is not and it would be wrong of me if I didn't tell you that what you have is not what I've had and believe me, you are right, it should not have taken my gyno so long to find that answer for me!!!  But here again, my masto caused the confusion for a long time we wondered what role it might have in it since there are a few disorders which cause a compromise to the immune system that make it so that candida is very difficult to treat and the suspicion for me is that this is part of the problem.  

Now, you asked Ramona about eosinophils and CBCs and the NIH.   In fact, it was when you were trying to explain yourself that what came to mind was the NIH!!  Are you American?  If you are, then I honestly think that you need to consider going to the NIH and see if there are any studies having to do with parasites for I very honestly think that this is where your problems lie.  If this is what you are consistantly showing, then I honestly think that this is the key to your problems and you must run this situation down until you find answers!!   As Ramona said, parasites can indeed create allergic reactions and it's that they end up stirring up the immune system and causing a rise in eosinophils, which is a white blood cell involved in the immune defense system and have a role in inflammation and allergies.  They can rise to very high levels all due to parasitic infections and the NIH is able to run tests that you won't find anywhere else in the country, so it's very worthwhile to seek them out and see if they can help you.

Your CBCs are your complete blood count and in there you will see that the eosinophils can be measured within your periferal blood.  You will have raised eosinophils seen in tissues as well as periferal blood and when they are very high, this is indicative of something really wrong with you and your doctors should have their eyes popping out at this finding!!!

Gibby, although we don't know any doctors here who can help you, we can give you some direction even so.  I've gone into the NIH website - National Institute of Health, and gotten a bit of information for you.  There is one doctor's name who stands out and I would suggest that you write to this doctor telling him about all that you have been up against and ask him for his help!!  This is the method that I've had to use to find my help from here in Brazil, for although I live here, I'm still an American citizen and have a right to help from the doctors of my country.  So, this is what I suggest to you, just to see if you might get some doors to open.  This is what I suggest that you begin doing, Gibby.  If you really have run through every doctor within your region, then it's time to step up a level and begin seeking our doctors of a higher level - researchers and university professors for these are the "House" type doctors.  Lower level doctors are great for treating us on a day to day basis, but when you are talking about something that is defying your doctors and they are getting no where with you, then it's time to recognize this and go up a few more levels.  I would think that you should be able to get Dr. Crandell to open up a few doors for you.  

Oh and the CDC, ha, sorry I misread it, that's the Center for Disease Control in Atlanta.  

I'd personally try the NIH first for sometimes they will pay for your travel and testing to Bethesda.  They also have various studies around the country which can sometimes be very convenient.  But the CDC is a place that I would think that Dr. Crandall would have contacted already in regards to your case since it seems to be such a tough case.  She must be able to open up doors for you, I would think.

Anyway, here is the information I found on this one doctor, Dr. Alan Sher, and his study group.

http://www.niaid.nih.gov/labsandresources/labs/aboutlabs/lpd/immunobiologysectio...

Alan Sher, Ph.D.
Phone: 301-496-3535
Fax: 301-402-0890
E-mail:
Asher@niaid.nih.gov
Mail:
Bldg. 50, Rm. 6140
MSC 8003
Bethesda, MD 20892

I would very seriously consider sending him an email if I were you.  If you're really working with such a rare parasitic situation then they are going to really want to see you, Gibby!!!   They will JUMP at the opportunity to study you then!!!


Here's also some study information:

http://www.niaid.nih.gov/_LAYOUTS/NIAID.Internet.Controls/SearchResults.aspx?q=p...

http://www.niaid.nih.gov/labsandresources/labs/aboutlabs/lpd/gastrointestinalpar...
This study above has another doctor's contact information.  Try also contacting him!
Contact Info
Theodore E. Nash, M.D.
Phone: 301-496-6920
Fax: 301-402-2689
E-mail:
tnash@niaid.nih.gov


Gibby, there seem to be a LOT of studies on parasites with the NIH and I just can't give them all to you, but if you go down the line and begin reading you may find one which fits your needs.  Here is another page of them and at the bottom you will find that it goes on for about 10 or more pages worth of studies!!!   That's quite a lot of research they're doing there - I sure do wish they'd do that much with masto!!  

http://www.niaid.nih.gov/_LAYOUTS/NIAID.Internet.Controls/SearchResults.aspx?q=p...

Anyway, again, write to those two doctors at the NIH, tell them your story and beg them for their help telling them how much you've gone around and not been able to find answers or help.  Be careful, however, about not saying anything about a mast cell disorder - hypersensitivity is okay cause they can understand that, but if you say mast cells and disorders in the same line they will think you are talking about masto and will send you off into the wrong direction.   So, tell them basically what you've told us here, it will be great and tell them about Dr. Crandall and her opinions, etc.  I'm sure they will be very interested especially when you tell them about these mysterious parasites probably being what is behind the candida infection.  But be careful, you have to word this as though you're seeking for help and not informing them of what you have.  Word it in such a way that they hear your cry and plea for help, which is what you want them to hear.  Tell them your story as though you are merely repeating what your doctors are saying and that due to their confusion, you are seeking out higher ups to gain their help.   This is how you approach these levels of researchers.

I hope this not only is a help to you but also an encouragement.  Gibby we really do care and we really do want to help you but we just don't know how to outside of our small realm of illness.  We very honestly would hate for you to get sidetracked and that's because others have gone this way before you and it's been hard to have to say these very same things to them too.  But again, it would be wrong of us to not stop you from going off in this wrong direction for we know how hard it is to find the answers and we don't want to cause you harm even if it means taking a harder stand with you.   So please forgive me for having to be stern with you but it is out of concern for you that I did this, to prevent you from going astray on your search for answers.   Remember, Gibby, a negative result on a test isn't really that at all - it merely tells the doctors, NOT HERE!  LOOK ELSEWHERE!   And this is all I was trying to say.  

I hope you understand.

Lisa