gibby wrote on 03/05/11 at 00:39:37:Hi, I think I have a very unique problem although I did read on the past forum
there were some other women that had this.
I have had a wicked vaginal yeast infection that lasted for months on end.
I had to take daily anti fungals for 3+ months, and was tested for everything in
the book. All was normal but still left with a vaginal itch!!! I had biopsies,
cultures, and talked to dermatologists, infectious disease doctor, but all
boiled down to nothing. Very very confusing to sort it all out!!!! Out of
process of elimination to all factors, it it was determined that it was not a
direct allergy, but more of a hypersensitivity reaction. I met someone who said
I could have a mast cell issue in that area. I noticed that when I took zyrtec,
symptoms completely went away. Adding Zantac to the mix, to hit the 3 histamines
was really good!! But, I was then told to not keep taking Zantac because it's
bad for stomach and starts a domino effect in the body with bad things. So, I
only take when I have to. I'll take the zyrtec on days that I work. Also, a
friend suggested I use cromylyn which is a mast cell inhibitor. I can't get a
doctor to prescribe it, and so I just bought nasalcrom and use 4 squirts in a
natural lubricant to apply when it itches. It helps a lot. Has anyone out there
had this type of problem?
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