Josie, thanks so much for all your information.  
I have zyrtec and zantac. (Rantidine)   that's supposed to cover the 3 histimines.  You think I need others?  It's comforting to know that you all say it's safe to take those, and the zantac is safe as well.  I don't have any stomach issues, or brain fog stuff either.  I am on a maintance dose weekly for the diflocan, to make sure the yeast stays away.  Was on the stuff daily, plus creams and ointments.  Last 2 visits to the gyno, the yeast was gone.  As fierce as it was to get rid of, I am on weekly now.  I saw an infectious disease doctor knew about mast cell stuff! I was amazed.  He told me I was talking to the right person, and that he is a microbiologist.  He did tell me that they all are safe to take long term.  I suppose I could go back to him if needed for this stuff.   What test would I take for this?  I don't even know if I should bother, because my treatment would be the same.  I know the antihistamines help me...for now anyway.  Just wanted to find the source so I wouldn't have to stay on them forever.....but for now, ok.  
  What do you mean "degraulate"    I looked it up, but still don't understand.

Hi Deborah,  A friend that has a mast cell disease (she's also a microbiologist)  brought it to my attention that my symptom seemed to be maybe a mast cell problem.  She has educated me on so much, and even made me aware of this forum.  You see, after all the yeast, and ruling out all other causes, and allergies, it was brought to my attention that I had a hypersensitivity issue.  It had to be that since it was nothing else.  I was tested 2 years ago for food allergies, IGG and IGE, and the only thing that came up was elevated apple.    After having horrible candida, I thought I could have developed another allergy.  I consulted Dr. Crandell, the well known yeast guru, and she told me to to get tested for the candida allergy.  I had 2 scratch tests, and 1 intradermal.  All negative.  We really thought I had a candida allergy!  But not so.  That's when she and everyone said it was just a hypersensitivity.  It seems as though the vaginal tissues are producing histamine by some type of autoiumne reaction.  Dr. Crandell told me early on, when I was on the diflocan, to take zyrtec.  I refused thinking I was taking to much meds.   Many months later, I had bought it and decided to give it a try.  Wow, itch gone.  My microbiologist friend also clued me in and told me that histamines react early in the morning.  wow, another bingo.  I noticed most of my itching in the morning.  Putting these 2 together, I realized that I did have this hypersensitivity, allergy type of thing going on.  She said it could be related to mast cells... so now, I've been learning about it all.  No, I don't have other symptoms.  But after having a horrible vaginal yeast going on for so long, then things can manifest themselves in that area.  My situation is rare.

Hi Gibby, welcome to our forum.  I hope we can help you in some way.

As to it being rare, I don't think it is so very much, Gibby.  I've gone for almost 2 years battling a yeast infection and it about drove my gyno to complete distraction!!   And no, I don't really know how right everyone is about it being a mast cell issue either!!!   I have a feeling that you're needing to push your gyno to finding better answers for you or you need to go to a higher level gyno.

Why do I say this?  Well, my situation was definitley extreme and before my mastcell disorder came out of hiding, I didn't ever have any problems responding to the correct medications for vaginal yeast infections.  Whenever I would get them, the typical treatment of 10 days on cremes always resolved the infection - ALWAYS!!   However, once the masto came out of hiding, and mine is an autoimmune mast cell disorder, then everything changed overnight!

Well, the yeast infection I got about 3 years ago came following a cystoscope.  A cystoscope is an endoscope that goes up the urethra into the bladder in order to take a look at the bladder.  The doctor used iodine and didn't know that I am highly reactive to iodine - no I have NO IgE or IgG allergies to iodine and I've been fully tested too.  But Iodine is a KNOWN mast cell degranulator and some of the iodine ended up getting inside of my vagina.  This as well as the use of some antibiotics I had been given with some dental work gave me a double whammy situation which put me into hyperdrive as to a vaginal mucosa mast cell reaction to the iodine and then the wiped out vaginal flora due to the antibiotics.  The candida had a heyday and my gyno worked overtime trying to get rid of this!   I used pro-biotics, he used antifungals and antibiotic cremes and ointments and even gentian violet, which I ended reacting to!  He did everything he could, however, I still was itching!!

He got to the point that he had decided to speak with Dr. Castells and gain her help but his connections were bad and he never got a chance to talk with her, but even then, she didn't know what else he could do since he was doing everything he could do, that he knew of.  We suspected that the mast cell disorder may have been present because the earlier histerectomy I had undergone had shown that I had a mast cell hyperplasia in my cervix and this was indeed a mast cell related disorder there, so we thought that perhaps the itching was all the mast cell issues but the testing was negative so that wasn't the issue either.  So with all of these negatives and since I'd gone through plenty of antifungals, we were seriously questioning if it was indeed the candida.  So, my doctor did a very specific testing for candida and sure enough it was totally ruled out!  My doctor was totally baffled!!!  So he wisely decided to go to a higher up and that doctor said that it is very, very likely that I had a very rare form of vaginitis, one where the Ph balance is negative.   So, after retesting me, he found that Yes, the Ph balance was in the negative!!   What was happening was that due to the aggressive bombardment and treatment he had to go through in order to rid me of the yeast infection my vaginal Ph balance was in the too low ranges and this in turn triggered cell death.  This cell death causes this rare form of vaginitis which has little secretion but itches the very same way that any other vaginal infection itches.   The steroid cremes are what were the most effective against the candida and it was this and the antifungals together which got rid of the candida.  But what was still causing the itching was not the candida, but instead the rare vaginitis due to the low Ph balance!!!!

So, what was his treatment?   BICARBONATE OF SODA!!   His instructions were to douche with a mixture of distilled water and 300mg of bicarbonate of soda every other day for 2 weeks!  THAT'S ALL!!!    I've been TOTALLY FREE of the vaginal itching ever since!!

Although some patients do have their mast cells triggering vaginally, it's pretty uncommon, Gibby!   In talking with Dr. Castells and her trying to help with this and my own biopsies looking for mast cells in the vagina, although there are many mast cells within the vaginal area and uterus, it is very uncommon for them to trigger and cause major itching.   And, according to my masto specialist, if you did have mast cells being activated in the vaginal area, then with intercourse and all the friction that produces, you'd be going into anaphylaxis with sex!  You'd also be going into major triggering with even urination for the process of having to use those muscles down there and the physical act of urination and sex would be constantly triggering you!!  You'd very honestly know without a doubt that you've got an invastion of mast cells there and your doctors would know it too.  The itching is NOT a major mast cell issue there, anaphylaxis would be!!

How do I know?  Well, it's not my own suspicions that tell me this, but the activity that I've had.  Gibby, my doctor has seen me faint and go into anaphylaxis about 2 or 3 times due to a simple gynecological exam!  Dr. Castells explained to us once what happened because all he did was to take some swabs, and just that activity caused me to faint away!  She explained that some mast cells were triggered and they immediately caused a vasovagal reaction which when racing up the nervous system and this triggered my faint!!

So, although you are talking with doctors who may know plenty about candida, they don't know much about mast cell disorders for this is not how it functions.  You may have some kind of candida allergy, and it may indeed be what is causing you to have some reacting - I can't argue against that.  However, I can assure you that just that itching does not suffice for a mast cell disorder reaction for you'd be going into anaphylaxis otherwise!!  The physical activity of sex and the friction and rubbing it produces in that area would put you into MAJOR REACTING way over and above that of just insane itching!   You'd be having serious breathing difficulties, diarrhea, hypotension, flushing and many other very serious reactions.

So, be at peace, Gibby, although the itching is indeed horrible, thank your lucky stars that you're not doing anything more than just plain itching!!   Believe, me, you would seriously know if this was indeed a mast cell disorder and again, itching would not be the only thing happening with you!!   You'd go into anaphylaxis my dear!!

Talk with your gyno about this rare form of vaginitis which is caused by a low Ph balance.  I wouldn't be surprised that this might not be what your problem is.  

I hope this helps you!!

Lisa

Gosh all of us are very yeasty! I currently have a yeast infection on my skin that will not go away, I'm on my secound presciption for tinea versicolor. Stubborn yeast.
I love hearing everyone's responces......a turkey baster! Lol!
I heard rolling a tampon in yogurt and then breaking open a probiotic and then rolling the tampon in that works pretty good.
I used to use boric acid capsules, but that probably isn't a good idea anymore.
Melissa

Melissa, guess what?   Been there, done that and not the answer girl!!

You don't need to use a tampon, you can just put the probiotic pill at night and go straight to bed, your body will do the rest.  It gave a little bit of relief, but in reality I strongly recommend that you work with your doctor on this.  If you've got a GOOD GYNO then he/she's going to keep working with you until it's conquered, period.  Mine did!  I could have given up and gone to another but not only is this one doctor of mine a PhD but he's also one of our best and going to another would have only begun the same routine all over again.  It's best to keep pestering your doctor as I did until he begins to see that this is indeed a major issue and that some serious study and treatment needs to be done.   And since these meds have the potential of triggering us, and more importantly since ANY infection will and does trigger us, you MUST have your doctor seriously involved in combating this infection!!  

Gibby, this is another thing about mast cell disorder patients in that any kind of an infection, any kind, will cause more mast cell activity and triggering because the mast cell is involved in all of the healing processes as well as defense mechanisms.  It doesn't create extra itching, but it makes us go into anaphylaxis more easily.  

What your gyno has to do is to devise a PLAN OF ATTACK to get rid of this infection.  He needs to attack it with oral antifungals as well as topical cremes.  He's also got to take various cultures during this in order to confirm that the candida is indeed the problem and he's got to be checking the Ph levels as well.  After confirming that the Candida is no longer there, if the itching persists and he's coming to the end of his tether then he needs to go further up the line to colleagues who are higher up in gynecology and get advice and counselling as my doctor did!  There exist other forms of vaginitis outside of the candida infection and we patients are not able to really tell the difference between them for they ALL ITCH!!!!  Yet, although they all itch, the secretions are diferent and the treatment is radically different!!  In order to deal appropriately with each infection you MUST work with your doctor so that the answer can be found.  

As to the probiotics, yes, I've taken them and they HELPED, but they were not the miracle pill that every woman hopes them to be.  The miracle pill was my doctor's constant working with me to combat this infection and we worked at it for 2 full years!!!!!   WE FINALLY BEAT IT!


Heather, one of the lessons I've learned in my journey is that with those of us who are neoplastic at least, the mast cells can indeed be found in the vaginal tissues as well as any tissue throughout the body.  We found the MC hyperplasia in my cervix and also in the common bile duct.  We didn't get to biopsy the common bile duct, but it was seen on a sonogram to be dialated without cause butu in my cervix it was pathologically proven.   The neoplastic form of mastocytosis will indeed do this and you can find that information on the 2007 WHO consensus document for it's mentioned there.    For those who don't know, a mast cell hyperplasia is nothing more than an area of inflammation with tons of mast cells present.  They are normal mast cells, not neoplastic mast cells.  They will come, gather, throw a party (mine hemorrhaged) and then disappear again.  Why the disease does this, the researchers just don't know, but it does happen!  Whether or not this happens with the non-clonal MCAD is anybody's guess at this point.  But these mast cell hyperplasias can and do happen and they apparently can happen anywhere in the body.  Dr. Castells was certainly surprised to find it in my cervix for that's never been reported before - the common bile duct has.  But this is why we did a biopsy of my vaginal tissues - we wanted to see if any MCs had migrated there and that this was why I was being triggered with sex and the like.  It was negative.  What has happened is that with sex, it wasn't the physical activity there causing me to faint and go into anaphylaixs, it's the overall activity that was doing it - getting the blood going.  This is very situation is one that is common to ALL of us, including the men and the way to deal with this is by taking an extra antihistamine shortly before the activity and this helps to keep from going into anaphylaxis!   My doctor laughed histerically when he heard this and said that Allegra has turned into a type of Viagra for masto patients!   I said Yep, it sure has!!!


So, I hope this helps ladies for it's most definitely a challenging situation to have to work with!

Lisa

Hi Gibby , Lisa , Deb , Mel ,

My advice was based on Gibby having an esatblished mast cell disorder . I agree the vaginal itching and peristant candidia alone is not definitive .

I agree you need to discuss it with your gyno . Form what i am reading gibby , am I correct in saying the candidia has gone , but the itch remains ????? There are as someone said some forms of vaginitis which may be worth considering .

The cromlyn will work as mast cells are involoved in any inlammatory and infection process . It does not follow that this equals a mast cell problem  

Local control of inflammation is the key here I hope you get it sorted .

I have problems around reactions ( swelling and itching ) and secondery to antibiotics - for a persistant lump in my right axilla .

I hope this clarifies things
Josie

Morning Josie and hi to all
Just a few interesting tidbits here that probably dont relate to this case but I think are worth mentioning for others who read these posts.

Vaginal itching and extreme thirst are the 2 most common signs for someone who has developed diabeties, so always let your Doctor know if you have these symptoms.

We Masto patients are a strange lot ! OK Im gonna tell some things that are a bit,, personal but Im hoping it helps someone else. I cant wear underwear anymore because the constant friction makes me swell..  Also I dont have any private activities.. its a double whammy fo me.. IF the blood gets stirred with mast cells, then add a constant friction besides it... I end up in the hospital. Talk about sounding ridiculous!

I also have the weird symptoms of the liver swelling then going back to normal and all liver enzymes test normal this month --so it must be activated by something hidden.  From what Ive been told by Doctors it isnt unusual for people with auto immune diseases to do that.

Josie, Im also having a problem with swollen lymph nodes.. It started in my right jaw then the worse one is also in my right axilla and my last Dr appt, he said all of them are swollen but more right sided, weird LOL.  I am even showing numbness and neuropathy in my right hand and fingers from it. Also being diabetic, its hard to say which symptoms are masto and not diabetic sometimes (and vice versa)--but the diabetic neuropathy usually begins in the feet not upper torso. (developing it slowly too, toes going numb).

I want to also let other members know that you have both good and bad bacteia and yeast in your body--they exist in a delicate balance. Wipe one out and the other will jump up and take over... and infection! Remember IF you take an antibiotic that you will probably develop a yeast infection because you wiped out ALL bacteria not just the bad kind. You will usually develop candidas or thrush about one week or so later. Treatment of choice with most Doctors is Diflucan.. or Nystatin swish and swallow.  IF you get a yeast infection in your mouth, look to the other end too for signs of infection. LOL.

IF you cant get to the Dr quickly, the cheap OTC treatment is Monistat cream 5$ at Dollar General store, can be used internally and externally (for itching) too. Also eating yogurts with live cultures in them (like Activia) will definitely help until you can see your Dr.

Hope this helps someone,
Ramona

Gibby, as to you testing it yourself, I honestly doubt whether or not it could be considered reliable versus the doctor doing it - you could always end up getting other secretions by accident and it's always more reliable having a lab do that testing or your doctor's doing it there in his office versus your trying to catch it on your own.  Besides, you really want your doctor to get himself involved - you know, force him to take an interest into what is happening there.   I think that a lot of these self-helpers are in truth women who have not given their doctors a real chance to do their jobs!   I kept at it with my doctor for a full 2 years and although it kept me nuts over this, due to the fact that these infections can cause the mastocytosis to go into overtime I had to have a resolution to this and I knew that doing the do it yourself stuff wasn't working.  It gave me some relief, but it never resolved it and I can now see why and it's due to the fact that it's not always candida which is the culpret here.  There are other bacterias and germs and a whole range of floral balance within the vaginal tissues that are hard to regulate.  It's like the intestines, youvé got a whole lot more going on in there than is apparent to the lay person and it's not all to be blamed on candida!  We patients are pretty stupid at times because we want to blame it on one thing only and have it be a quick fix and since we're unaware of all of the many other things that can influence an infection we jump on the bandwagon of what others find has helped them and this is just plain stupidity when you think about it.  Each of us has our own body system and each of us reacts differently to different things independent of any other illness we may have.  What may have thrown your body out of equilibrium may not be what has done it for me or another and when we take the advice of others and try what worked for them, we are possibly making our situation that much worse!  This is why even for something as stupid as a vaginal yeast infection you need to have your doctor taking you by the hand and together working this out.   Together you will find out the answer to your specific situation!

As to the name of it, gee, it's a funny name and I never manage to memorize it.  It's got one of those medical names of something like Vaginitis Culpite or something funny like that!   I tried googling it after my doctor gave me the name for it, but I never was able to find out what it's name is.  It's a rare form of vaginitis and it's due to the cell death that the low Ph causes.  He explained it to me and even he was surprised for he'd not heard of it either, and he's got a PhD in gynecology.  He's never come across another patient in his 20 years who had this and it was a real learning lesson for him as to other forms of vaginitis.  Yet, for anyone who has been with a long-term vaginal yeast infection and treatment, this is very possible for the candida will lower the vaginal Ph.  

However, one thing I must say, you have to question why it is that you're infection seems to be so difficult to treat!   It's very unusual for a patient to not respond to the anti-fungals within a few treatments of them, orally and topically.  If you are not responding to them, they why?  What more is going on that you're not responding to treatment?  There could be illness behind this or medication.  If you are taking steroids, these will hold back your immune system and thus make you vulnerable to these kinds of things.  Yet, if you also have some kind of disease like AIDS which compromises your immune system, then you can also have these issues.  

As to a mast cell disorder being the culpret, there isn't anything in the literature which proves that masto patients are any more vulnerable to these than others.  However, my experience has shown me that my masto has made me more susceptible and harder to treat once I get a yeast infection and this could be due to our medications as well as the disease itself.  Nothing has been studied and so there's no proof that masto makes us harder to treat with this problem, but there again, you need your doctor's involvement in order to say, What is behind this problem and why are you not getting cured?  Too many people want to say it's the fault of Candida taking over your body but without any other evidence of this either in your mouth or your intestines, I'm not ready to buy it!  It's the miracle cure all and fall guy for everything these days and that's just plain stupidity!!!  It's not good medicine!

Now, Josie, remember, you get this itching in those regions as part of your angioedema, remember?   You get the swelling and itching as part of your disease. This is not the mast cell disorder showing itself in you but the angioedema and it's reacting - it's a known symptom that angioedema shows itself in the vaginal regions, both externally as well as internally, so all of your grief is precisely that - the angioedema showing itself.   You've got to go back to Dr. Grattan since the guy he sent you to is just not all there.  Write to Grattan and tell him of your consultation and the results and tell him you're not happy with him and want to be in his care independent of how far away he is!!   You need HIM until he can get you stabilized and then can hand you over to a colleague!!!

Gibby, I'll ask my gyno for the name of that rare vaginitis and will post it here when and if I get an answer from him.   But go to your gyno in the meantime and tell him about this rare form of vaginitis that has to do with cell death and low Ph values.  It would be worthwhile for him to do some special testing on the mucosa and perhaps another biopsy of that area and have some immunohistochemical testing of your mast cells and other cells within the vaginal wall.  This person who is telling you about the mast cells reacting may have a point, but unless you've had specific immunohistochemical testing to take a look specifically at the mast cells themselves and how they are shaped and reacting then it's an assumption that can't hold water.  The mast cells must be properly stained with tryptase and there are specific markers what test to see whether they are reactive or not and a special histopathologist who does this work.  It's very specific this testing and until it's properly done there's not a doctor in the world who can tell you what the mast cells are doing in that area.  Granted, it is a very possible situation you could have going on there, but it's nothing that can be seen by the naked eye and no doctor in the world can prove it without that specific testing.  Mast cells are invisible to the naked eye and they can not be seen except under very specific testing.  Once seen, then that's another ball game and it's worth pursuing, especially if you are not responding to treatment.   However, whoever it was who has told you about the mast cells and their reacting to the candida really doesn't know what they are talking about unless they've done research into mast cells themselves.  It's all pure assumption otherwise.

I hope this helps!   I'll ask my gyno what the name of that infection is and will post it here if he gives me that answer.  

Lisa