gibby wrote on 03/05/11 at 00:39:37:




Gibby, I want to recall you to your original post so that we could return to this original situation that you are asking about.  What you have described here I've tried to answer, but perhaps I was a bit too confusing with my answer.  There are several things here which need to be addressed openly so that you can understand what I'm trying to explain to you.  

First of all, I notice that you've got a lot of "friends" counseling you and you’re trying things out on your own, but not a whole lot of doctors involved (remember, this is only by what I can observe through your comments).  We patients are fortunate in that the internet has made a lot of medical information available to us thus allowing us to educate ourselves.  However,  this access to information is very dangerous both physically and emotionally for without it being balanced by doctors and their much larger understanding of medicine we can end up causing SERIOUS harm to ourselves as well as to others.  Some articles are experimental and need testing to prove them, others are just plain off and weird and are not sound medicine.  We patients don't know this because we've never been through medical school and don't have the basic teaching to educate us to these things.  We're plain ignorant of it all.  And there are even some sites which seem to be reliable sites where “doctors” are making claims but those claims are fronts for quackery but they sure do make it seem convincing!  Only we patients would swallow such stupidity due to how ignorant we are!!  We are like children and we gobble it up as though it’s all truth!!    It’s like cheating a child with chocolate.  There are those really tremendous chocolates worth killing for and then there’s those really cheap waxy things that even your dog would refuse and yet to a child, it’s all great and they don't know the difference between them!  There is NO WAY you are ever going to convince me that Carob is Chocolate!  NO WAY!!  I KNOW THE DIFFERENCE!  And the thing is, Gibby, the doctors do too!!!  But we patients DON’T and we’re stupid enough to swallow it all hook, line and sinker and worse yet, BELIEVE IT TO BE TRUTH!!   This is where the dangers are!

I'm not one who is going to shoot anybody down for doing their own research for I've literally saved my own life due to the researching I've had to do it but I've done it reluctantly and yet this is highly dangerous if you don't have doctors involved with you to balance off the information for we are mere patients and have little if any medical training which helps us to understand it all.  Even nurses, with all of their training can't hack it either even though they've got medical training - they still are not doctors.  They will often make dangerous presumptions based upon their having medical training and there are plenty of nurses who find themselves getting into trouble, and even some doctors who don't have a doctor working with them to help them see it all clearly!  How much more difficult is it for us who have no medical training, and yet how easily we fall into the trap of self diagnosis thinking that we know better than doctors do!!  

It’s so easy for us to convince ourselves of a diagnosis based purely on the fact that we THINK that our symptoms line up with a certain disease.  You see, Gibby, I’ve done this for myself and I not only made a total fool of myself in front of my doctors, but I almost was stupid enough not to believe them when they told me of the mistake I’d made!   You see, a mast cell disorder gives the EXACT SAME symptom patterns which a cancerous tumor gives, that of the Carcinoid Syndrome.  To my eyes, the symptoms listed were exactly what I was showing and it’s so very, very confusing that even my doctors were fooled and we kept going around in the very same circle over and over again and I had to keep retesting for this cancer over and over again due to the confusion it causes the doctors.   And I’m not talking about low level doctors, mind you, but higher leveled specialists in these particular diseases!  I had both mastocytosis specialists and neuroendocrine specialists going back over the same ground trying to figure out if I had it or not!  It was really hard work for them!  But at the time I’d begun researching my illness, I had no idea of the pitfalls we patients can fall into and I’d pretty much convinced myself that I had that dangerous tumor and I was scared to death that they’d give me a false negative and then years later end up finding out that I did have it after all!!  Yet, it was only after I saw the highest authorities in the country on these tumors and they came right out and said YOU DON’T HAVE THIS TUMOR that I realized I had a serious choice I had to make – either I was going to LISTEN TO THE DOCTORS or make my own decisions as to what I had.   Wisely I realized the foolishness of my own behavior, and ate a big piece of humble pie and said, I’M NO DOCTOR AND I MUST LISTEN TO THESE EXPERTS!!   I had to recognize my place as a patient and it was a hard, hard lesson to learn as to how very stupid and foolish I’d been to convince myself of a disease based upon symptoms alone!  I realized that the doctors didn’t use their opinions nor symptoms to teach them what a patient has, but they use HARD FACTS and MATERIAL PROOF of the disease to show them what it is that a patient has.  They use symptoms merely to GUIDE THEM, period!  Once they can figure out what the symptoms may be indicating, they then rely upon scans and blood and urine tests in order to PROVE what the patient has!  This is why they ask us to go through thousands of tests and scans for without SOLID PROOF you can have any number of diseases for many symptoms overlap and this is why they don’t take any chances with us buy pulling a disease out of a hat at the first symptoms that match up well enough.  Testing always must accompany their processes and back up their motives for treatment.  Our lives are in their hands.

Yet what we patients do is read about the diseases and their symptoms and we make the huge mistake of diagnosing ourselves and also treating ourselves based upon our symptoms alone and this can be deadly!  But it also brings to us a psychological/emotional conflict in that we CONVINCE ourselves as to what we have and we then close our minds to what our doctors have to say to us!   How many patients have the nerve to say, My doctor didn't have the slightest idea of what he was saying!   Where do we patients get the gall to be able to say this about a doctor?!  We're not qualified to judge them, at least not on the first throw like this!   Yet, too often we're ready to do it on the first sneeze!!  And yet if we had a doctor trying to tell us how to do our jobs, we'd be jumping with anger at his nerve!!   Yet, I can assure you the very first rule of thumb that a doctor has drummed into his head is that YOU MUST NEVER DIAGNOSE UPON SYMPTOMS ALONE!!    There are some diseases which remain undiscovered as to biochemical testing, but any doctor worth his salt is going to run tests doing his very best to put his finger on what is wrong and only when he's exhausted his resources will he consider treating based only upon symptoms unless the condition is so very obvious.   The reason for all the testing is because the process of elimination of competing diseases is as valid in the diagnostic process as it is that of testing for a suspected disease and finding it with that test.  A negative finding on a test tells the doctor “NOT HERE, LOOK SOMEWHERE ELSE!” and our doctors know this.  We patients don’t!

I learned this lesson the hard way, Gibby and when I realized how very foolish I had been, I swore that I would never do this again!  From that point on I have run to my doctors time and time again asking for their feedback and input and they give it to me.  You see, Gibby, I don’t live in the States, I live in Brazil, even though I am an American and have lived in the States until I married.  I’ve got to work within the system we have here in Brazil and the doctors don’t have the same kind of support system as you have in the States and unfortunately I’m one of THOSE patients that they end up writing up in medical text books for my case is extremely rare and complex and I’m scrambling to find doctors and answers and am running out of where to turn to.  I’ve got the support of the highest authorities in mastocytosis and other areas of medicine due to how rare and complex my case is and since I’ve got so few doctors I can turn to here in Brazil who can help me and my low-level local doctors, they have all recognized that I’m an exception to the rule patient and are helping me.  I’ve been forced to do all of the study I’ve had to do not because I wanted it or took it upon myself, but because it was forced upon me by my circumstances.  Yet, the more I learn as to how very complex medicine is, the more I lean upon my doctors and their understanding to balance me!!  Not a day goes by that I’m not either writing to a doctor or hearing from one and everything I come up against which has my local doctors baffled, I throw at the authorities.  

This is why your comments seriously concern and worry me for you seem to be getting the majority of your feedback and advice and suggestions from friends and people who are not doctors and you are going to get yourself into serious trouble and do yourself real harm by listening to these people and even listening to your own reasonings!  You’re not a doctor and you don’t realize the harm you are causing your body for the temporary relief you may be gaining.  You have a very dangerous trade off you’ve got there and you could cause some real damage to yourself through your ignorance.  Although you and your frends all mean well, if you don’t balance their input and your own conclusions with that of a doctor’s opinions and advice you are going to do yourself harm and it will be your own fault for not having relied upon your doctor instead!.

Now, as to this situation of a problem with the mast cells in your vaginal tissues, perhaps I didn't make myself understood, so I'll try to make it more clear to you.  

Gibby, you refer to information from the other forum on this subject.  It was me who was talking about it on the other forum Gibby.  I'm that patient who had the finding of the mast cells in my vaginal tissues.  Gibby, this is an exceptionally rare finding, and I've not found another reference to it on the internet and I've spoken with Dr Castells and Dr. Dean Metcalfe at the NIH about it and to the best of their knowledge, this has never been reported before.   This is not the first time I've shown something extremely exceptional for I'm also the 1st masto patient to face surgery to repair my aortic aneurysm too!   So I speak with authority when I say to you, This is NOT your problem, Gibby.
YOU DO NOT HAVE A MAST CELL DISORDER.  Whoever told you this or suggested this to you does not know mastocytosis and how a mast cell disorder works!  Although  mastocytosis will indeed invade specific tissues, it is not known to invade the vaginal tissues.  I do not have mastocytosis of the vagina and I did not have mastocytosis of the cervix.  I had a mast cell hyperplasia, which means that there were too many normal mast cells there - THEY WERE NORMAL in shape, but NOT in function.  Why not in function?  Because I HAVE A PROVEN MAST CELL DISORDER.    Again, this is NOT YOUR CASE!  I have a PROVEN mast cell disorder.  I have elevated urine histamines and pathological proof of mastocytosis within my bone marrow.  My doctors have  NO DOUBTS and they are my doctors saying this, not me.  This is sound medicine.  It is nothing that I suspect, but what is proven and I can assure you from having spoken with Dr. Mariana Castells about my finding of the mast cell hyperplasia in my cervix, that this is NOT mastocytosis in that region.  It is merely a migration of normal mast cells for some yet unknown reason and they did this in my common bile duct as well.  Why?  Only God knows!  Yet it was due to the SYSTEMIC REACTING, that of anaphylaxis and fainting - severe cardiovascular reactions, that my doctors felt that there was a need to do further searching.  The biopsies showed that all of the vaginal tissues WERE NORMAL.  This means that the systemic reacting WAS NOT LOCALLY CAUSED!   I did NOT HAVE ITCHING!  I had fainting and anaphylaxis being triggered - severe reacting and it was ALL systemic not local.  In fact, there was never any itching involved that was not directly related to a vaginal infection be it either the candida or the cycloitic vaginosis - they were the only thing which caused itching and the moment they were resolved so was all the itching!!   This is why I can firmly say to you, that what you read that I and the others were talking about that this is NOT YOUR CASE!  

As to medicating yourself, what you are doing is dangerous for antihistamines do have cardiotoxic affects upon the heart and if you are not seriously needing them, then you should not use them.  Also to be playing around with a mast cell stabilizer when your mast cells are FULLY NORMAL and merely doing their normal job, this is dangerous for when you need them to behave properly you are inhibiting them instead and they won’t be able to defend you when they need to.  You could be totally aggravating your situation by foolishly playing doctor with yourself and for your safety, you need to stop!  

Okay, I can hear your argument…BUT IT WORKS!   Dear, of course it works, whatever is going on with you, be it a bacteria, fungus or virus, your mast cells are doing their job as they should!  And your using a mast cell stabilizer, you could be masking whatever is behind them making them trigger.  Yet they are being triggered and releasing histamine and that’s what’s making things itch so bad!!!  But they are NORMAL MAST CELLS and this is what they are supposed to do!!!  You’re not being triggered into anaphylaxis and there is no other systemic reaction and only itching, albeit terrible, is not a symptom of a mast cell disorder.  It’s a symptom of NORMAL MAST CELLS DOING THEIR NORMAL JOB.   Gibby, you do NOT have mastocytosis or a mast cell disorder!  You have completely TOTALLY NORMAL MAST CELLS! What you have is a vaginosis or some other infection and that’s all!  What about the rectal itching?  These regions so easily contaminate one another that you could easily pass one cause of the itching to the other and I’ve had that happen with my candida infection!  That’s easily recognized and the doctors orders to me were to use some of the steroid cream on the anal opening and it was easily resolved.

Gibby, please hear what I’m trying to say to you in that there is nothing seriously wrong with you and this is not a serious problem.  It is nothing more than a out and out nuisance and you need to recognize it as that.  It's nothing more than an inconvenience and you are making way too much out of it.  If you keep insisting that it is more than it is, you are going to do two things - one is upset your doctors to the point that they are going to begin accusing your of mental imbalance along the lines of Munchausens and then you really will get nowhere, and you will also convince yourself that your doctors are worthless and then take full control over it and then put yourself into real possible harm by trying to treat a disease that you don't have and perhaps get yourself into a much bigger hole than you are in already.  

Gibby, you need to be oh so grateful that this isn’t masto for masto can be deadly!  If you seriously doubt my word, I’ll be more than happy to pass on to you Dr. Castell’s email address and you can ask her to speak with your doctors if they should have any serious doubts as to this, after all I am just another patient.  You could try speaking with her about it but she is a very, very busy doctor and won’t often speak with patients as she prefers to talk with doctors instead and she may not answer you.  

But if I can give you any real, useful advice, Gibby, it’s that you stop speaking and listening to other patients and what they have to say for either they are going to tell you only what they know about their own situations, which depending upon the patient is a dangerous thing to do, or they are going to tell you exactly what you WANT to hear and that could be EVEN WORSE!   You also need to stop treating yourself!    What we patients who are using the internet need to keep in mind is that we need to hear THE TRUTH and keep our minds always open for hearing the truth even if we don’t like what that truth is. I’m not saying to never look on the internet, but you must be more wise about how you do it and what you are doing with it.  A site like ours here is one that has a good balance for we have a core group who does a lot of study and we will question one another as to what we know and what we are studying and we bounce it all off of one another back and forth!  We doubt ourselves and we question what our own conclusions are and we send each other medical articles trying to help gain more understanding.  Several times I’ve taken some information from another patient, thrown it at my doctors and I’ve gotten answers for them from doctors, which is what I did for you yesterday.    This helps to keep me from going off the deep end and wandering into trouble for my doctors will tell me flat out, Lisa, it doesn’t work like that, and I’ve learned to LISTEN!!!!

So, Gibby, as hard as this is for me to say this to you, your are making serious mistakes by listening to too many people who are not doctors, you are taking their advice over that of your doctors, and you are totally ignoring what your doctors are saying to you.  The reason why they didn’t want to give you a mast cell stabilizer is because YOU DON’T HAVE A MAST CELL DISORDER!  You not only don’t need it, but you are going to hurt yourself by taking medication that you don’t need.  I’m sorry if this is hard for you to read, but someone must stop you from self diagnosing yourself and from self medicating yourself for you are going to cause yourself serious harm otherwise.  You need to go to your doctors and stop thinking that you know more than they.  They can guide you, Gibby and they can help you learn more of how to take care of yourself through their guidance.  They’re not incompetent and neither are they ignoring you.  If they are ignoring you it’s because you are showing the very same foolish behavior that I was once guilty of.  I learned my lesson and it was painful but it was an incredibly important lesson I learned and it’s taught me how much more I need my doctors and their understanding now than ever before!!  I hope that you will also learn this same important lesson and come to depend upon your doctors as much as I do for they truly are the key to keeping us healthy!

Lisa  

Hi lisa ,

I completely agree with you.

With respect to nurses. I also agree with you . I only comment on what I know , to masters level , in a nursing manner . I have a reponsibility for my actions and ultimate accountability for what i write , Yes . i could be sued if advice I give is followed to detriment of anyone , freind , acquantance or family .

I also recheck any information prior to posting to make sure it is accurate and up to date .

I have had several ideas about possibilities of dignosis for my condition , but I know that does not make it so . All questions I have I discuss with my doctors and I always write that I am going to discuss factors that are outside my knowledge .

I know I was disappointed after clinic last week . But I know doctors are at different levels . I know this one was one for the list  a doctor but not a specialist . So was not able to answer questions . But Interstingly is looking at my questions . I as you and many here have seen many doctors in admission and in investigations . 5 stand out . only 2 for bad reasons . 3 for very good ones . I need doctors to listen and treat what they see xxxxxxx Willing to follow expert guidance to keep me safe .

Thats it . they are not my friend , they are my doctor . BUT , they know their job and if they do it I am happy  

Nurses , have responsibility and accountability , code of conduct and regulatory body . Even if I never practice again I will adher to that . I will also use my knowledge where I can , safely and responsibility to educate myself and anyone who seeks knowledge appropriately and works alongside doctors , even if at times that means explaining your experience and symptoms , to gain rounded and safe care

Its about a patrnership , not a dicatoriship on all sides .

many hugs

Josie

Guys, ok.  Calm down.  I am sorry.  I don't want to disrupt the group.  You all are really great people to take time with me.   But let me correct you lisa on a few things.
   Trust me, I have been to many many doctors on my condition.  I have gone full circle.  I don't know what else to do about my condition.  I told you many many times, I have been tested and looked over by gynocologists.  By dermotologists, by a pathologist, and an infectious disease doctor.  I am back to my gyno, who has checked me every 2 weeks for the yeast since September.  After the yeast left, I now graduated to see her back in 6 weeks.  (comming up actually).  I am on a weekly dosage of diflocan, a maintance dosage that all agreed for me, the gyno, Dr. Crandell, and the infectious disease doctor.   I have gone full circle girls.  I told you, I was tested for everything. All disorders have been discussed and ruled out.  vulvodynia, lechen schloerosis, HIV, diabetes, Trichonoisis,  Std's, vaginal atrophy, cycolitic vaginosis....probably forgetting some....  I don't know what else that I could be tested for, seriously.  so, that leaves me with an allergy type of reaction after a horrible bout with yeast.  The allergy reaction is not a candida allergy.  I have been tested for candida allergy, - again negative.  so, I just have some type of autoimmune reaction, THAT DOES RESPOND TO ZYRTEC AND ZANTAC.  THESE MEDICATIONS WERE DISCUSSED BY DOCTORS - GYNOCOLOGISTS, INFECTIOUS DISEASE, AND DR. CRANDELL.  WHO ALL AGREED I HAD ALLERGY REACTIONS...OR HYPERSENSITIVITY.  
I UNDERSTAND I DON'T HAVE A MAST CELL DISORDER NOW!! I GET IT OK?  I GUESS I'M IN THE WRONG PLACE NOW. I only had one person advise me, suggesting that my situation seems to involve mast cells reacting.  Ok, I get it.  They are normal cells doing their job.  They are just hypersensitive now.  
   I am lead by doctors.  You have misunderstood me.  Listen ladies, the reason we reach out to forums is to gather other peoples experience with the same health thing we are going through.  Share experiences.  The reason I went to Dr. Crandell was because she is the yeast specialist, well known on my kind of stubborn yeast.  she knows more than any other medical doctor out there.  We have phone consults, and my gyno has consulted her on my case as well.  she's the expert on yeast, not my gyno and the gyno admits it and needs help.   I think you've misunderstood me.  We all share our experiences on the posts.  I hope someday I can get over the candida fully.  I won't burden you with all that stuff, that again, controversal.  A misunderstood disease that the doctors don't understand.  My problem is that if I had parasite or candida, there is not one doctor who can solve my problem.  It takes many.  I can't explain.  But as a person, I've had to do my own research in these areas.   Lisa, True, it's hard to trust the infectious disease doctor, telling me that I shouldn't worry about the protozoa that I have, that we all have them.  No, I don't believe him.  I want to believe him but deep down, I feel it is what caused the yeast.  I hope it hasn't caused the yeast, because if it did, then I will have constant battles.  that is for another forum, not this,  Bottom line, doctors don't believe people have parasites.  They are hard to test for because the tests are not sensitive enough, Those that get a definate diagnosis are lucky.  The others have to treat and guess.

Hey all, had to drive my daughter somewhere and couldn't finish my other post.    Anyway, Ramona, I have tested so many times for parasites, you have no idea.  I've had the best and most sensitive test out there.  It's called the Metametrix GI effects.  They use DNA testing.  No other lab does that.  My protozoa is unitdentified.  Parasite present, taxonomy unknown is my diagnosis.  2 times.  I have sent stuff to labs, shown dermatologists and doctors samples of what I thought were worms.  All to come back nothing "food fiber"  Everyone thinks you have to travel to a foreign country to get a parasite!!  do you know parasites are everywhere?  In the water, drinking water, streams,pool water, lakes, fish, meat, vegetables, sand, dirt?  yep, unbelievable.  they are everywhere.  No one is safe?? !   No one can escape them.  It's just that some are unfortunate to get them.  Doctors are in denial.  Do you know that doctors don't study parasitology in medical school??  Do you know that my regular doctor is from Venezuaela, and I told him I had something.  He didn't believe me even when he said he had a parasite come out of his rectom and crawl on the floor.  This is a common parasite in Venezuaela.  common there.  He knows all about parasites, and still thought I was nuts.  You guys, it's not so easy as you say.  Doctors believe people don't get parasites because their tests come up negative.  Because they are not sensitive enough to pick them up.  Anyay, enough on parasites.  They think a rectal itch is not anything serious.   But yes, it is, because I believe it's the heart of my problem.  Yes, they steel your nutrients, and spread their toxins, and deplete your system, and create an imbalance.  No, I don't have a mast cell disease, but Lisa, my problem is rare, trust me.  Don't minimize my condidtion.  Lisa, you have a mast cell disorder.  Yes, that is serious.  But, you were cured your vaginal itch by baking soda.  You got your answer from in my opionion, a doctor should have known this a lot sooner!!!!  It's not that rare.  I've read about that from the start and asked my doctor months ago about it.  They can  tell because if you don't have normal healthy flora down there, that is an indicator.  That was an easy fix, and you suffered for 2 years.  Well, it's been 2 years for me.  I still am battling it.  You can consider yourself lucky for not being so uncomfortable anymore on a daily basis.

Riverwm, my esonophils was 0!!  I learned that indicates allergy or parasites.  But it was "ABSOLUTE EOSINOPHILS    0L   "    reference range 15-500....

so there I am registering absolutely nothing.

Thanks Riverwm,  what do you think about the eosphilus?   Why was it completely low?
  Riverwm, you can get parasites right here.  Everyone thinks you get them outside the country.  True, but it's just as easy to get them anywhere.  Also, if you don't have severe symtoms, then the docs just think your silly.  I actually could not see an infectious disease doctor when I got this.  They wouldn't let me in.  I finally had this connection because of my gynocologist working with him.  I said, hey, I want to see him for this other issue, and she gave the referral.  Most infectious disease doctors think if you don't have a life threatening condition, then, your not worth it to see.  Hmmmm, well, I will have to see, maybe get another stool test which I was thinking of doing anyway.  Believe me, I have seen so many for this.  I'm on a protozoa forum.  They are all guessing, ordering drugs off the internet, and making all sorts of concoctions.  It's sad.  They have to take it in their own hands.  The meds don't work, and the doctors have no clue.  By the way, I haven't been outside the country.  A GI doctor told me I had pinworms and you could get it from a doorhandle.  Just like any other germ. The eggs are airborne!  yes, seriously!    He knew because his family had it!!  He treated me, without testing me, just on my symtoms.  Now, this new infectious disease doctor told me it was impossible for an adult to get pinworms.  Just doesn't happen!!  Wo!! See how they all differ?   complete opposites!!!!!      It must be so frustrating for you to all get a diagnosis so late, and to be dealing with doctors who don't know about this.  I feel bad for you all too.

CDC,... look toward a hospital like one of the Mayo clinics or NIH.  They are used to looking for the often overlooked condition.

What is CDC?   and what is NIH?   Thanks!!
Gibby