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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Vaginal Mast Cell problem??? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1299328777 Message started by gibby on 03/05/11 at 00:39:37

Title: Vaginal Mast Cell problem??? Post by gibby 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?

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/05/11 at 02:42:20 I questioned my doctor, Dr. Akin, one of the leading researchers about zantac and my other meds causing longterm problems. He said that there were no problems at all longterm. I think I have taken zantac, zyrtec, and allegra for about 7 years now. I have no side effects and do great. Now, I do notice that if I am late on taking my zantac in the afternoon (I typically take it at 4:00), I actually remember to take it because I will start feeling a bit of hearburn. The interesting thing about that is that I NEVER had heartburn before I began taking zantac! I don't take it for heartburn, of course; I tale it to control my mast cells due to terrible GI problems (abdominal pain, diarrhea). The zantac eliminates those symptoms for me. So, that is the only thing I have noticed about zantac. Like you, I dislike the idea of meds, but if they are fixing a malfunctioning problem in my body, then it normalizes me. So, they are necessary in that respect. I do take as few as possible and control my symptoms through high avoidance of triggers.

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/05/11 at 02:43:31 Forgot to mention: Singulair is very effective for itch control with mast cells! It is amazing how much that helps. You should definitely ask your doc to try you on this. 10 mg once a day should do it!

Title: Re: Vaginal Mast Cell problem??? Post by missybean on 03/05/11 at 03:40:10 Oh the itches in the not so nice area. Lol! I went through the same as you, all the tests and even no yeast infections. As soon as I elimanated my trigger foods which are most eggs, gluten, soy and dairy. It stopped! Those food seem to give many people problems. Also if you every get rectal itching, a couple of my doctors including the gastro doc said there are certain foods that has some kind of substance than does cause rectal itching.....tomatoes,wine,beer,tea,and chocolate. I'm finding chocolate is a big one. Hope that helps. Melissa

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 04:55:54 I was tested by my naturopathic doctor who said to eliminate wheat, dairy, tomatoes.  Those were the biggies to eliminate now.  All are just sensitivities, I have no IGG's.  But still diet has not made any difference.  I have been off these for about 2 months now.  Gluten was ok, just not the wheat.  My question is even if they are not sensitivities or allergys, they could still cause itching?

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 05:00:10 Thank you all for your replies on this.  Getting back to the meds, I was told by someone that the antihistimines will NOT last forever as far as their effectiveness.  Anotherwords, they will eventually stop working.  That is why this person suggested I used Cromylyn because it's a mast cell inhibitor and will keep working.  She helped me to make a solution to apply there, using Nasalcrom, 4 squirts to 1 tsp. of a sensitive forumula lubricant.  It seems to help but wish i could make an ointment eventually. I'd need a compounding pharmacy to do it, but I really don't know if it's safe to use in the vulva area!  My gyno will think I'm nuts!

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/05/11 at 05:41:26 Quote: 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. This is soooooo incorrect!!! Most of us take Zantac 300 mg twice a day and it has helped me so much!! It not only helps your tummy it is also an antihistamine, so YOU know your body and how YOU feel.. if it helps, take it!! Hugs Ramona

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 05:46:04 My doctor told me that zantac depletes mineral absorbtion which eventually can lead to bone issues like osteopia/ osteoporosis...

Title: Re: Vaginal Mast Cell problem??? Post by Sandi on 03/05/11 at 06:21:58 Gibby there is a total different mindset to battling a mast cell disorder and someone with common allergies. They are not one of the same although the symptoms and treatments can be common. The person who told you I was told by someone that the antihistamines will NOT last forever as far as their effectiveness.  Anotherwords, they will eventually stop working. My guess is that "knowledge" came from a person that does not understand mast cell activation disorders at all. Avoiding,skipping and not taking antihistimines/ mast cell stabilizers has had pretty serious consequences for me. My body is ravaged from not being on antihistimines and trying everything the natural world had to offer. For years on end.   If you do have a mast cell disorder I beg you to really look up all the info on how it works, you are absolutely correct that any mast cell stabilizer is great as long as it is tolerated. I have yet to hear of a person solely on them to treat Masto or IA?  I use a lot from the homeopathic/ alternative world and there is a lot that I should not have went through that those physicians are not "ears open" to recognize as true disease that needed to be addressed rather than treatable intolerance. You can be totally allergic to something and test negative to it ( renowned allergist comments and that is well known, there are positive negatives and negative positives, and the tests are not at all 100 percent accurate, they also do not test many of the foods people are exposed to) Allergy testing  is to be used as a starting point. Now on to triggering which is a mast cell issue, Lets say I'm out in the garden, I start to feel woozy, ears start ringing, I flush, something in my environment has triggered my mast cells to release their contents and I am now getting sick quickly. It can be something in the air I smell, don't smell, something I ate, or something in my body like hormones. Many times a lot of us can figure out our triggers/clues and many times cannot. We learn eventually to first respond to the symptoms those are real and immediate and will show us who's boss quite quickly if we chose not to take action. Oh geeze I wanted to initially comment on your "itch" issue. Yes yes yes, I struggle there also, its horrible, I itch so intensely and deep inside I want to go crazy. It drives me the most insane at night.  Like with Missybean I had much relief when getting rid of food triggers. Now I tested negative to sunflower with my homeopath, negative with blood. I was ingesting it as sunflower oil in several products and also it was in my natural lotion........ Well latest allergist ( now over 20 years I've had tons of allergy tests) this one did a skin test ( I had refused skin tests for 20 years because of a horrible reaction in an allergists office when they had gotten to the third item) anyway mega positive off the charts for sunflower.  Being in the homeopathic world for a long time I was already on a serious elimination diet, fully aware of ingredients, etc but this one was in there because I thought it was safe, it's even in toms toothpaste! When I got rid of that, a lot of my "internal itching" stopped. Along with a final regular routine of antihistamines. Ironically it just started recently again, about time for that time of the month, also spring allergies will bring on many of my symptoms,  I can pretty much promise you if you have a mast cell disorder and you do not get the masties under control you will have long term medical problems from a body ravaged by continuous mast cell degranulation.   You being very educated on you and the world of mast cell disorders is the true way to conquering this, you can learn to balance both worlds to get yourself to a healthier place. On having a mast cell disorder I've  become an expert on Sandi with a mast cell disorder, I  can help gibby with her mast cell disorder but in the end you have to refine your treatment to you.  Let's say My allergist says you can eat cantelope you tested negative to it, I take three bites my lips swell larger than angelina jolie's, my tongue breaks out my mouth and throat are itchy. Well I tested negative to it this can't be happening..... well it is and it's time for some benadryl or I will be in the ER next........ :) So should I eat another cantelope because the doctor said I could because his test said I could?   Oh another prob with allergy tests is they only test the food protein, there are tons of enzymes etc in a food to react to and the test will show none of that. Also there are many varieties of that food also, I can have a plain ole Idaho potato, but any "butter variety" forget it!!!

Title: Re: Vaginal Mast Cell problem??? Post by missybean on 03/05/11 at 06:47:16 Gibby, it might have been the naturopath that told you to not take the zantac. I had one tell me that too. I hate that I have to take all these meds. I'd rather pop some vitamins instead. Some alternative docs will tell you that the heartburn is caused by to little acid rather than too much and by taking HCI tablets it will correct it and you won't have heartburn anymore. Maybe that might work for some, but I think for masto patients it's the histamine that produces that excess stomach acid so taking H1's and H2's helps with that. The zantac  works really well for a lot of us for flushing and itching as well as tummy problems. I can totally eliminate my reflux with diet and by drinking aloe vera juice several times a day, but the zantac really helps my itching so I take it. I definitely think there is a place for both western and eastern medicine but just make sure before you close the door totally on taking some more meds, do your research and talk to someone who really knows a lot about mastocytosis. Melissa

Title: Re: Vaginal Mast Cell problem??? Post by Starflower on 03/05/11 at 06:52:43 gibby wrote on 03/05/11 at 05:46:04: My doctor told me that zantac depletes mineral absorbtion which eventually can lead to bone issues like osteopia/ osteoporosis... Histamine is what tells your stomach to produce acid.  So... an important effect of taking Zantac (and other H2 antihistamines) is that they reduce stomach acid.  In a normal person, this might very well decrease mineral absorption over the long run, leading to osteopenia or even osteoporosis.  BUT... if you're already making waaaaay too much stomach acid (because you have something like a mast cell disorder, Zollinger-Ellison syndrome, GERD, etc...), then by taking Zantac you're just dialing the acid level back down to a normal level, not a sub-normal level.  You'll still have enough acid to absorb calcium and other minerals.  See the difference? For a person with a mast cell disorder, the greater danger is in NOT taking daily antihistamines... prevention of symptoms is the key. Heather

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 06:52:56 Thanks Sandi,   I just don't know where to start with this stuff.  How great would it be to find out the magic food or ingredient that could set me off?  Listen, this whole thing started out as yeast.  Horrible yeast that would not let up.  I am left with a vaginal itch that is still there.  Some days I am fine and normal.  Other days, I itch.  My friend told me estrogen levels at their height can trigger mast cells to release.  Makes total sense.  I itch mid cycle when estrogen is at its' highest level.  But I itch when I have my period too!  I think my own fluids are a trigger.  When I have a discharge, I itch.  I think I have a hypersensitivity to my self!!  No rhythm or reason.  I don't have any immediate allergies, but maybe some sensitivities, so I'm told by my new naturopathic doctor.  I'd never know. I don't react to anything, and have always eaten everything!!  So, maybe it's a mystery food.  How will I ever know????  I've eliminated wheat, dairy, tomatoes, but feel the same.  Makes no difference.  I really don't know how to find the mysterious food that could be an answer.  Or maybe it's not a food,  maybe I am going to itch by everything even my own body fluids.    Hmmmmm, could try to stop the eggs for a while, see if that makes a difference.  That will be hard, I'm already on a candida diet, and for me to eliminate that will be so hard.

Title: Re: Vaginal Mast Cell problem??? Post by missybean on 03/05/11 at 07:05:50 Gibby, Ahhhh the candida diet. I felt so good when I went on that diet. Trying to get back on it. Good for losing weight. Yes try the eggs. I eliminated gluten first and while it improved itch on my arms and joint pain, I still had that awful itch. When I got rid of eggs. It stopped. Hopefully you will be able to find the trigger for the itching. Melissa

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 08:20:07 The candida diet is so limiting as it is.  Plus now I've eliminated wheat, dairy, tomatoes, and it would be hard to forgo the eggs, I eat them everyday for protein.   Have you all heard about that magic masto cream?  It's a mixture made of cromylyn and other things.  Supposed to be wonderful.  Only problem, don't know if I should use it vaginally....I made a version of it.

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/05/11 at 09:25:02 Hi Gibby , I completely undersatnd the itching . I am battling it myself . Regards finding the food to avoid , that then i will be better and how overwhelming this all is I also compleltly understand . For the mast cells down there , you need to be on a good mix of meds . Typically , as a group we are on 3 types of antihiatamines to cover as many oppertunities to control symptoms as possible . With so much advice I needed to go back to basics a bit . So heres a josie guide to the meds :-) I am an RN . Zantac - Ranitidine , blocks the histamine receptors in your stomach and bowel . This means any histamine from there or traveling there can not cause trouble there . As sandi said it reduces stomach acid to normal levels :-) also you are being kept an eye on . so any throretical problems if the did ever arise ( VVVVV unlikely ) would be spotted nice and early :-) Benadryl / ceterizine / zyrtac ( all the same ) - is a non drowsy Histamine receptor type 1 blocker . So the areas that have type 1 receptors , lungs , down below , skin , are blocked and the histamine can't attach and cause trouble there :-) Allegra - non drowsy anti histamine - which is commonly taken twice a day at 180mg a dose . Ketiofen and chlorheramine mealate , are histamine recpetor one blockers . ( caution with chlorpheramine if decongestants are a problem ) They are also mast cell stabilsers , so in taking them you get 2 for the price of one . I worked out the stabilising benifits before I was told , it just seemed to help ( piriton ) Most patients are on ketiofen :-) Vistril - hydroxizine is being used for brain fog :-) Singulair blocks the chemicals called lucotrines , this reduces swelling . It was designed for little ones with asthma . But in angiodeama , and any mast cell problem it helps reduce swelling for us . Not just in the lungs but in many other areas :-) and good old gastrocrom :- mast cell satbilser . this is used when the person is getting no reief from anti histamines and singulair management of symptoms is the key to less symptoms and less ED attendances :-) Diet is in the same way reducing the amount of histamine released and ingested to help the whole situation along :-) mast cells will degraulate - end of - the trick is to stop its effects :-) You ahve naughty mast cells . The way I picture it is like this is living with a barely house trained teenage monkey :-) so you will ahve to clean up after it , anyways , but if you irritate it , choas ensues , and thats how it is :-) Take away the triggers - irritants and take antihisatmines ( clean up ) then it will never be quite controlled but your ready for it . In all this I have hated not being able to control this .  I tried and continually fialed . Thats because I was totally focused on one trigger and was ignoring others . It was only when i was on a good balance of meds that I could see the other triggers :-) A diary will help you see patterns you amybe ahven't till now :-) The meds dont cover so much that you cant see danger coming . It just makes danger less scary . my example is brain fog as a sign of reaction . when i was on inadeuqate meds my barinfog would deriorate to shouting and confussion . Now I just cant find a word , an obvious one , then I know . antihiatamines and in 10 mins i am ok . Sometimes is a really big histamine hit so I get more symptoms but it gives me time to act :-) As for the vaginal itching , you have mast cells there , so if you have a mast cell problem then you need to treat that :-) Some of the candidia diet things are things that irritate mast cells or have lots of hisatamine :-) so you have excluded some mast cell irritators :-) I wandered if the lube has something in :-) as I wouldn't tolerate it as I can't do gelatine in any form :-) My first round of problems didnt respond to pesseries or creams . It was the alcohol in them . ( 6 month episode ) The next lasted 1 month but i reacted to the gleatine in the fluconazole ( anti fungal capsule ) I am there again . I have had liquid flucocnzole . Ill let you know how I go :-) Im seriously condisering a turkey baster and live yougart . I am now diabetic and that doesnt help . I just itch when my sugar gets high . i can predict my sugar between 17-18 by my itching . It may be worth you being tested . Bear in mind I didnt test positive until may last yr 2 yrs after my first intactable yeast infection :-) many of us find just under wear will make us itch , so going commando ( indoors ???? ) may help. some ladies have tried sitz baths ., with some effect . yeast infections are purely were the controlling bugs have been destroyed and the yeast / fungus gets to run riot . if you ahve the classic white thick discharge then its likely a yeast infection . If not it may be your masties . nasal crom will not cure the problem if its candidia , just take away the itch xxxxxxxxxxxxx I do wander if its more your masties now  :-) as even the most stubborn candidia will run in the face of an antifungal orally :-) I hope this helps :-) Josie

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 10:12:11 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.

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/05/11 at 10:46:06 Gibby, Most doctors around the country think that they are an expert or know quite a bit about mast cell disease. While they have good intentions, in reality they don't even realize that they don't know much about mast cell disease. So, you have to be very careful about putting your trust in a doctor who says he knows it all. There are some very well known mast cell disorder specialists (discussed on this forum). Those do know what they are talking about. Others? Well, who knows. Now everyone needs to remember that no one knows for sure that Gibby has a mast cell disorder. You haven't mentioned any other symptoms except for vaginal itch, and it is not characteristic of mast cell disease to only have 1 symptom. It is easy to blame everything on mast cell disease, but there could be other causes. So, keep an open mind. It seems to me that zantac is not going to be of that much use to itching. However, if this is mast cell related and unknown foods are causing the itch, then zantac will help. Singulair is definitely the one to try for itchiness as well. It seems extreme to jump to the mast cell stabilizers when you have no mast cell symptoms except vaginal itching. Typically those are being used to prevent various stages of anaphylactic shock. Now let's assume that you do have a mast cell disorder that is being triggered by unknown things and that you are lucky enough that you don't experience anaphylaxis and that your sole symptoms is extreme/severe itching. In order to help ourselves, you can't just depend upon medications to do it. It is also highly dependent upon avoidance of triggers and figuring out what those triggers are. That might mean giving up almost everything that you eat and just eating one item for a while that doesn't bother you (while taking the meds as well). It is all trial and error, and in the end we may not be happy to limit our foods so extremely, but the bottom line that I always tell people to think about is: If you feel sick enough (or in this case itch enough), then you won't care about giving up the foods if it means eliminating the symptoms. (I will note that some people aren't triggered by food at all, and their triggers are other things.) Ultimately, we do have a bit of control over how sick we are going to be and it is up to each of us to decide what to do about it.

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/05/11 at 11:54:18 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.

Title: Re: Vaginal Mast Cell problem??? Post by Sandi on 03/05/11 at 14:14:11 Josie, I've heard of the turkey baster and live yogurt also! For me it is masties, not yeast, now gibby! You are doing a great job at troubleshooting! So just keep at it girl! do you tolerate some sort of serious colon flora replacement? I started out on the Candida diet etc in the 80's it was my first hope for help! It did help,and really educates you on your body. I think some of the girls on here tolerate PB8, also my MD/Homeopath highly recommends garden of life primal defense, I don't tolerate it at all, I'm currently trying pro-bio inulin free, I've been a mess so I can't identify if I'm not tolerating it so I stopped. Also bio pro by Vitamin Research Group. Hey if I recall the oldschool Candida book by William Crook had a homemade vaginal cream. My guess is you are already on one, some don't work as well as others. Eggs do make me itch insane too as someone else said. Keep addressing that candida and if you are improving with antihistimines/mast cell stabilizers then stick with them for a while and see if you can settle your body down then you can "test" things again. I'd suggest do not to the "vinegar" cleanse if you think you have a Mast cell disorder, I think vinegar triggers us all! I can't imagine how my insides would feel if I squirted vinegar inside :0 You are doing good and the troubleshooting takes awhile doesn't it!

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/05/11 at 14:52:18 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

Title: Re: Vaginal Mast Cell problem??? Post by Starflower on 03/05/11 at 15:08:37 Just to add a note from my own experience... When I'm in full-blown anaphylaxis I get hives all over my body... and I mean ALL OVER :-[  Even in my genitals.  The itching is insane!  But... like Lisa pointed out... I don't have itching at other times.  I can have sex, I can have a GYN exam... no problem.   In a recent article, Drs. Akin, Valent, and Metcalfe recommended limiting biopsies to the skin and bone marrow.  Why?  Because a person with a neoplastic mast cell disorder would have evidence in one or both of those tissues... not just the vagina.  Other types of mast cell disorders (secondary activation) would also cause other types of symptoms... heartburn, headaches, flushing, hives, runny nose, nausea, etc... not just itching confined to the genitals.   Heather

Title: Re: Vaginal Mast Cell problem??? Post by missybean on 03/05/11 at 15:55:51 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

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/06/11 at 01:15:22 Sandi, I can take probiotics.  But I tolerate them on a stomach that is like 1/2 empty.  I take one that has 30 billion, and PhemDophilus - for the female parts.  I will keep taking them.  Primal Defense, yes, I've read those.  Seems like a great product.  I think it was very expensive, but mostly, it had something in it that I wasn't supposed to have now, maybe in a milk base?  or maltodexterin or something...can't remember.  Hmmmm, don't know of the homemade cream you are talking about, but I will try to find out!  Sounds interesting, although I've tried all the home stuff before I finally turned to RX's.....wish they had been the answer for me.  SF722, Boric acid suppositorys, white vineger/water douches/ yogurt tampons, tea tree oil, tea tree soaps and tampons, gentian violet, garlic cloves.......months and months of trying these.  (Garlic worked the best for me!! haha)    Lisa, wow, you've been through the mill huh?  gosh!  all that to finally find out it was just a PH?????  Your story is unbelievable.  I wrote it down, and I'm going to talk to my gyno about this on Monday!!!!! she never checked my PH.  Not once.  How do they check?  Urine?  Pee in a cup?? or do they swab you and check the discharge???  Can they tell on a gram smear???  I've done Epsom salt/baking soda baths for detoxing, but never douched with baking soda.  Have heard of it though.    You sound like me totally.  It's embarresing Lisa.  My gyno (and she's a new gyno who's been so great with me)   she keeps telling me, "your way over my head"  because she's never seen yeast be so fierce and relentless.  She had her little yeast protocall.  But I told her it would not cut it.  I need it daily, and she needs to talk to yeast specialisit, guru, Dr. CRandell.  She went outside the box for me, and not only consulted her, but an infectious disease doctor.  So I am grateful for that.  My other gyno just sent me out the door with hydrocortezone suppositorys.....  Anyway, I thought I had ruled out everything, but now you brought this up that sounds like me.  I've bombarded my insides with creams, suppositorys, ointments, and more crap, plus the diflo, and ketoconozole.....I am going to call my gyno on Monday to ask about this PH thing.  I had asked her if I had cyolitic vaginitus, (the last and final thing, because I was taking probiotics, but she said, NO, that would have been an easy fix but not my case.)   I don't think she ever tested my PH!!!!  I can't wait to call on Monday.    Missybean, try GSE on your skin........grapefruit seed extract... see if it helps.  dilute it with a few drops of water if it's too strong. I thank you all so much for your help.  Wow, I'm finally in the right place.  :)     Seems like a consesus here, I'd be going into anaphalaxus shock if I truly had a mast cell disorder.   Gibby(Jenny)

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/06/11 at 01:28:55 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

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/06/11 at 01:46:28 Lisa, do you know if there is a specific name of that condition?  I was just trying to research it, but didn't find much.  (Negative PH balance) I have some PH strips, I can test myself until I ask my gyno.

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/06/11 at 02:05:32 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

Title: Re: Vaginal Mast Cell problem??? Post by Starflower on 03/06/11 at 02:52:41 Lisa wrote on 03/06/11 at 01:28:55: 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. This is is true.  However... biopsies of other tissues are not diagnostic for a mast cell disorder.  By definition, someone with SM is going to have too many mast cells in their bone marrow, not just their spleen, liver, intestines, vagina, etc...  So what's the purpose of doing a biopsy?  If you're already removing something for another reason you might as well stain it, but in other circumstances I can't see any reason for doing a biopsy beyond the skin and/or bone marrow.  Also, there's the question of "How many is too many?"  Lets say I had a uterine biopsy... even in normal people, the uterus is rich with mast cells.  How many is too many?  I don't think any research has been done to answer this question, so there's no reference point for the pathologist. Heather

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 02:59:25 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

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 03:01:59 Ops I type and think slowly lol.. Heather has posted in the meantime. Josie I know youre a Nurse, I wasnt trying to point that at you hon, just saying good morning!!! Hugs to ya me

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/06/11 at 03:08:54 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

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/06/11 at 03:19:36 Heather, you're so right!   I wasn't talking about biopsies as far as diagnosing a mast cell disease goes, but that of biopsies to see what is going on in there.   When a patient is in the diagnostic stage of the disease, you're right only those two areas are useful for diagnostic purposes - skin and bone marrow.  This is because, according to Dr. Castells, there are not enough doctors doing biopsies in other tissues in order to find out what is considered as too many mast cells.   So this is why those two tissues are the only ones that they can really go by.  Intestinal tissues are becoming more and more biopsied and thereby more reliable to know what may consist as to mastocytosis of the intestine and the bladder follows, but none of the other tissues.   My cervix showed 110 x to the field but she was looking for 115 x to the field to consider it mastocytosis and so I came up short with that.  But it still would not have been considered "diagnostic" of mastocytosis and instead just another finding.    However, the biospy that I'm referring to here is that of trying to identify the cellular activity that may be involved and gaining an overall picture of the patient's disease.  Pieces to the puzzle.    So, when the doctors are considering this aspect of our disease, then yes, any and all biopsies are indeed helpful for they give the doctors an overview of how the disease is affecting our bodies and what it's doing.   This is how we know that I'm not only autoimmune but also autoinflammatory.  By already knowing this, we are able to presume as to this situation going on in my lungs that this is the masto which has been triggered in me and that these nodules that have appeared as of my open heart surgery are indeed some kind of autoinflammatory growth caused by this form of my masto.  So all of the different biopsies that have gone on in my case, the fact that any tissue that has been taken with surgery has been run through the immunohistochemical testing, this has given my doctors an overall view of my form of this mast cell disorder and although we don't understand, it, we have better understanding of my body and what is going on with it.   So, yes, Heather, you are 100% correct, only those tissues are diagnostic.  But it's the overall picture that also is important and biopsies and proper testing are the only way to find out what that is.   I can only add to this that I sure do wish it were a lot easier!!   I'm scheduled for yet another colonoscope and a new search for those intestinal mast cells!  We've also got to see what's going on within my lungs now, and the testing that's going on with my aorta tissues is rocking the medical boat because I have ended up with a the C-Kit result coming back as negative on my mast cells within the aorta tissues and that's highly abnormal!  Mast cells are supposed to be positive for C-kit in mastocytosis, not negative and what it all means is now being questioned!!  And why has it been seen as negative in my aorta tissues of all places, especially when they've shown positive in all of my other tissues?!!!   So, here we go again with LISAZILLA rocking the medical world's boat with weird findings!!!   Boy does this get OLD!   :(

Title: Re: Vaginal Mast Cell problem??? Post by missybean on 03/06/11 at 03:40:36 Gibby- Thats for suggesting the GSE! I never thought of that, I have some in my cupboard. We take in during flu season. Melissa

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/06/11 at 04:06:52 Ramona, you are too humble. Did you all know that Ramona is a nurse as well? Lisa is practically overflowing with medical knowledge, enough to have an MD. Heather is our college professor who is definitely an expert on not just Masto, but the autoimmune aspect of it. And the list goes on. I could go on and on about many others here who are equally valuable in both knowledge and compassion. Thank you all for chiming in here to help Gibby! You are a great community!

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/06/11 at 04:34:44 Hi Deb , Lisa , ramona and everyone :-) Deb , thanks , yes we are a strong group , and you at the helm is invaluable :-) I hope the finals you are at are going well :-) Lisa , thankyou . I wrote to Dr grattan , asking exactly that . I ahve an appt with him in July and he has not moved my next appointment with him forward :-( I am busy collating info , and I am going to push for a sooner appointment as soon as I have everything together . i saw the underling not the boss , so I am going to give the boss a chance . :-) Thanks for bringing me back to what i do know :-) i did elude to it - i itch in reactions , but didnt make it clear :-)  The doc last week rocked me a bit as he was not taking my angiodeama seriously . " you may ahve a slightly swollen tounge and erethemous rash " so me collating is vital . i should be sorted by the middle of this week . I know he didnt know what he was talking about :-( but Im going into spring and am scared . i have 2 new drugs so hope they will help . but the last 2 springs have been so bad  , 5  ( 2009 )and 6 ( 2010 ) trips to ED with Epi pen level reactions in march and april each year . Ive also got swollen lymph nodes which i am on antibitics for as i ahve symptoms of infection . Infection just raises my risk :-( Just hoped for help before the spring . I had brain fog and flushing last night ?? Dust as my partner was doing some sorting out . Im settled now . Im ready to travel , but dont think I would cope with it ??????? :-( Ramona , yes , you are a nurse too :-) I didn't think for a second you were teaching me to suck eggs , all info on here needs to be complete and clearly expalined :-)  I am going to raise the question of is this related ?? I saw a female doctor with yrs of experience about the lump last tuesday evening . She was asking why hereslf ?? I had attributed it to my lymph nodes mopping up so much fluid . My neck ones arent up , but i feel my groin ones may be as my womb is riding low , not a full prolapse , but low . This only normally happens when I am due my period . My legs are continually swollen now . Not to a painful level as they were . but always up . Excercise will make me swell as will straining My fingers have been tingling and my right arm is larger than my left so i am suspecting fluid build up . My pulses are ok , so no block in blood supply :-)  Ill re visit my GP this week if it doesnt go down . here we have open access to a doctor in the community 24/7 . ED if we need it . the GP holds the financial pot for other referals . There is also a private referal system . Gp's run in packs . So i try to see one , but in emergency appts I will see whoever is available . the one I saw for the emergency ( lump getting bigger despite broad spectrum antibiotics ( flucloxicillin ) was a long experienced lady who is thinking outside the box :-) so ill try and get her again :-) Love to all Jose

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 04:50:51 Josie, Im so sorry Hon, I dont want you to be scared going into spring. We've all been there done that, no fun. I forget--can you take Vistaril?? It has been soo good for me, that and Singular and Chlotrimeton. (I know rou call them by different names in England). If youre reacting that often, time to increase something and I dont think you should wait til your appt.. I dont want you taking any trips to the ER before than possible...Hon, you know youre body, smack that flush down LOL.. throw a pill at it!! Do you have an emergency dose of prednisone ready IF you should need it?? It helps me to pat my purse and know it wont be a severe reaction if I need it. Security LOL.. Hey it helps... my energy level is suddenly going up and Im feeling WONDERFUL.. 4 shopping trips last week woohoo.. I wouldnt leave home before :) Now I had my hair done and took my daughter out for dinner! Thats what I want for you Josie.. the feeling that YOU are controlling it and no fear.. love ya Hon me

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/06/11 at 05:02:14 Hi Ramona , Thanks chick . i did . I had extra ranitidine and piriton . It did the trick :-) i had benadryl as well but i saw that again :-( Ill see if I can have hyroxidine in liquid .My pharmacist is fabulous . im going to ask about nasalcrom as well . As its available on prescription as is the eye drops so we could trial the drug that way  ( hopefully )  The doc tuesday said he saw no reason why not , for hydoxizine ( vistril ) even though he hadn't heard of brain fog ??????? His letter will hopefully reach my GP this week and I can have it :-) He didnt like nalcrom ???? but Dr Grattan suggested it so I may bebale to convince my GP to trial it .   Ive got my prednisalone firmly by my side :-) i am luckily 2 miles from an ambulance station and 3 from ED so with my epi pen I know ill be ok . I just dont want to have to go through it again . i dont want worry to make it happen so distracting myself as much as poss . Im sooooo pleased you are getting out :-)  I manged 2 weeks on the trott . Roll on may / june when the grass pollen season ends :-) many hugs Jose

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 05:10:47 Josie, another thought.. mine lump in the axilla was getting bigger and so painful.. I also believe it was obstructing blood flow to a degree--how are your fingers and thumb on that right hand feeling?? I took a course of prednisone and it helped force it to receed...Now Im almost off it and the swelling is still there but at a much lesser level and the feeling in my arm is so much better. I also used a castor oil pack (externally) with a heating pad set on low for that lymph area, then I elevated it and I think that helped too...so far so good.. I know its related to the masto, but honestly I dont remember the mechanics of it--but Heather does! :)  We could use an explanation dont you think?? LOL... Ohh Heather!! Love ya Ramona PS Josie, email me, I have that article about how Vistail helps brain fog, pint it out and bring it to the doc.

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 05:25:30 PS... I am also battling that swelling in the legs.. Im wondering if it is related to high prostaglandins?? I react to aspirin and that is usual treatment, so I used lasix with potassium x5 days and its fine now.. Im just wondering again... Heather can you tell us if swelling in the legs is related to Prostaglandin levels? Thank you O wise one lol me

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/06/11 at 05:53:24 Hiya ramona , Thanks I will :-) Id love lasix ( fave frusomide) but thats my inner cardiology nurse with potassium . Ive tried convincing my docs to prescribe it  , but they wont . I know not all my weight is fluid but a large amount is . So it would help with that as well . I am doubling my ranitidine for now . I have some scope in available doses to ahve xtra singulair if I need it :-) I asked a cardio question of the new doc . I think ill persue it with my GP . As my echo , december 09 showed an enlarged septum and I think a further echo would be wise . I will discuss lasix with my fave cardiologist . hes called Dr papouchado , Dr P to his nurses . he is amazing and will think outside the box . My fingers are just tingling , no numbness or pain in my fingers . My perfusion is ok , capillary refill good . The fluid build up is noticable in my upper arm with extra ripples and pain . I am taking paracetamol ( tylenol ) and its helping . I dont know if that would be safe as it is a salicilate . But it figures if it is prostaglandins , that paracetamol helps . Maybe the cold hands are not infection but reduced perfusion ??? This happens when the paracetamol wears off . i am often vomiting at this point . ??? smooth muscule spams ??? from prostoglandins ??? I evlevate it at night xxxx ill try a gentle heat pack . Its too sore for a bra side pressing there at the moment . I need a soft bra for when this happens , as its the wire that is bothersome . I had a soak in the bath this morning it was lovely . the carer helped me in and then a good half hour later my partner helped me out / dressed etc .   I only have problems with my feet when my sugar is high. This is apin in my toes and a burning sensation on my soles , esp if my feet are cold . In this situation i dont feel cold , just burning . when my sugar is ok . I have no pain in my feet . My bone , muscle and joint pain is not changed by my blood glucose level . hugs Jose

Title: Re: Vaginal Mast Cell problem??? Post by Starflower on 03/06/11 at 06:00:31 Oh boy... you want me to explain about the lymph nodes and peripheral edema??  Sheesh!  (j/k ;) ) There are basically three things than can cause swollen lymph nodes: 1. Infection 2. Neoplasms 3. Autoimmune disorders Infections will cause rapid swelling (which is painful) and an equally rapid decrease in swelling.  It usually lasts no more than a few weeks and goes away with a good round of antibiotics. Aggressive SM can invade the lymph nodes... not very common, but true.  Lymphoma is a fairly common cause of swollen lymph nodes that do not hurt and do not respond to antibiotics.  It's more common after age 50.  (Not that younger people can't get it... it's just less likely.)  It's also common for other advanced cancers to metastasize to the lymph nodes... they're little filters, so they catch everything unusual circulating through your bloodstream. The reason lymph nodes swell with autoimmune disorders is because that's where your B cell lymphocytes are found.  Chronic, out-of-control B cell antibody production = swollen lymph nodes that don't respond to antibiotics.   Keep in mind that it's absolutely possible to have a malignancy or an autoimmune disorder in addition to a mast cell disorder!  It doesn't mean the two are related... although sometimes they are. Peripheral edema occurs for so many reasons.  One common reason people have swelling in their ankles (and sometimes lower legs) is because their heart is failing... and it's not able to keep all the fluid circulating normally through the body, so it settles to to the bottom.  With systemic autoimmune disorders you sometimes get peripheral edema because of the kidney damage and/or blood vessel damage.  Ehlers-Danlos and POTS are other disorders where the blood vessels are too leaky... gravity can easily pull excess fluid into your ankles and lower legs instead of the rest of your body where it belongs. So basically... anything damaging your heart, kidneys, and/or blood vessels can cause peripheral edema.  It's something doctors should always pay attention to.  The cause, however, is more difficult to determine... so you can imagine how many people fall through the cracks when it comes to this symptom. Heather ps - Prostaglandins are associated with pain and flushing, not swelling :)

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/06/11 at 06:18:22 Woohoo, Josie you already sound better to me!! You go girl... that masto takes orders from YOU not vice versa :) Heather what would I do without you? lol.. I know my heart function output is good, they tested it with the last shock lol.. probably the kidneys, you know my IC.. it was under control too til the last shock--but its getting much better now that Ive added some meds! Thanks Hon, you make it so much easier for all of us! love you, me

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/06/11 at 07:01:08 Lisa, I didn't say that a person said it was a reaction to candida.  What I said was after you've had an infection in that area, it's gone, the area is sensitive to everything. It is a syndrome that is outlined in the book The yeast Syndrome by John Parks Trowbridge. The candida infection is gone as far as we know.  I saw my gyno every 2 weeks to check.  We hadn't seen yeast in 2 visits, so now, it's wait 6 weeks.  (about 2 more weeks for my visit now)   If I had a candida allergy, I would have been tested postive.  Then, I'd probably get the shots for desenziation.  Won't work in my case.  I was negative 3 times.    It was a tough infection to beat.  I think it was because I battled it for so long, but never got it totally.  I may have had a protozoa infection as well.  Still trying to work that out.   That is a whole other story.  Infectious Disease doctor didn't think I should treat it as we all have bacterias in our gut....blah blah blah......he was impressed with my testing though, (metametrix GI effects)  but said they'd find stuff in him too if he got the same test.   I had rectal itching, and 2 years ago when this whole thing started, a GI doctor treated me for pinworms.  Medication never really helped.  When I told the Infectious disease doctor that, he was very upset that I was never officially diagnosed.  I also had a hemoiroidectomy, 14 years ago, and anal fissure that he said would cause itch like sensations......to make a very long story short here, I treated myself with strong parasitic herbs, and colon cleanses for months and months trying to clean out my system and get rid of any parasites.  I didn't listen to the doctors....I still am unsure, and other doctors thought it was yeast in the gut all along.....toxins through the skin causing itch.......my point is that I was always scared that parasites were the cause of the yeast.  The parasite forums told me that.  made a lot of sense.  yeast/parasites go hand in hand.  Do the doctors agree with that?  Of course not! Doctors do not treat parasites.  They leave patients to figure it out themselves because the tests always come out negative.    I was never tested postive for any parasites despite many samples.....the only diagnosis, PPTU  Parasite presnet, taxonomy unknown.  Now? still occasional rectal itch.  I can live with it, as long as it's not causing the yeast.  That I will never know.   I don't want to get into all that with you guys, that's for another forum, but just thought I'd tell you why my case has been so hard to treat.  Most people have no idea of why yeast is so hard to treat.  They don't understand and think, that you just take 1 pill, and gone.  or you do one yogurt or garlic treatment, and gone.  Well, not so with me.  Wish it were that simple.   Anyway, back to the yeast stuff  - Dr. Crandell said it goes intercellular, in a dormant stage.  Under the skins.  It takes long term antifungals to treat which is what I have done.  I had also said I was tested for all everything, infections, std's, bacterias, Aids, diabetes, full blood work.  All normal.   Lisa, was it "Desquamative Vaginitus"  ?   Probably not. Doctors don't know much about this, but it can come after yeast.. I was diagnosed with that many months ago, and all it means is a shedding ot the lining.....dead cells....can cause itch and at the time, I did have some discharge.  This was my old gyno.  he just gave me hydrocortezone suppositorys and sent me on my way.   Itch just persisted.......that was before, I finally found a new gyno to help me.  Just don't know if she's going to help me any more with this.  I'll ask her if it could be what you say, and if she says no, then, don't know....maybe another biopsy.  But the pathologist and derm told me, you biopsy an area that has something to see...not normal skin.  Your just reaching for a needle in a haystack.    Also, Lisa, are you talking about Cycolitic Vaginitus?  This is treated the same way, with sodium bicarbonate - baking soda.  This is from to much lactobicillus in there.  You get an infection that mimics yeast but it is NOT.   I definatley did not have this because I asked her already.  ladies, don't insert probiotics up there!  This can happen, and it's not been ever proven.  I asked Dr. Crandell about it, and she writes about it in her packet!!!

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/06/11 at 10:46:53 My doctor replied!   Oh how I appreciate my doctors for they're truly terrific!   He told me that it's the cytolytic vaginosis.   This is what was caused by the candida and after we got rid of the candida this is what it had caused and then this is what had to be treated.   What happens is way too often we patients think we know our bodies but there are times when even we are fooled for this truly felt like it was the very same thing as the candida only I didn't have the same amount of secretion going on.  And since my doctor had never treated this before, he didn't recognize it either.  It's rare.  But it was only after he began to realize that what he was treating was not responding to his treatment that he began to take the right attitude towards attacking it and then his treatments got more specific and he began taking the necessary cultures to rule out and rule in the appropriate things.   This is why I insist that those women who bounce around from one doctor to another often cheat their doctors of the opportunity of finding the answers, but also those women who insist on home remedies may be only causing more harm than good for they're not on their own able to do the appropriate testing to see exactly what is going on in there. Now, Gibby, as far as your Dr. Crandall is concerned and her understanding of your situation, all that I can suggest is that you should ask her to speak with Dr. Mariana Castells at Harvard for Dr. Castells is an authority in mast cell disorders.   you see, Gibby, we can all go round and round debating these things but we are all patients and even though some of us have had to study our cases as though we are doctors, the fact still remains that we are none of us doctors.  A mast cell disorder, Gibby is a systemic disease, it is not limited to a specific region although it can affect one region more than another.  It's a blood disorder and this is why it affects the entire body and not just the skin or the intestines.  It's a problem with the mast cells themselves and they are throughout the entire body and this is why we patients will tell you, if you aren't reacting in other places, then this vaginal issue is not a mast cell disorder.  Could your mast cells be reacting vaginally, sure, why not?!  They're designed to do just that!   If you get a bee sting doesn't it turn that area red and itchy?  yes, and those are your mast cells which have caused that localized reacting.  The runny nose you get from a cold, the stuffy sinuses, and fever with a flu, this is all mast cell mediated.  But does this mean that you have a mast cell disorder, NO!  What you have are normal mast cells reacting and doing their job and function on a normal basis.   A mast cell disorder, however is a very severe disease which causes life threatening reactions to many of the patients who have it and it's SYSTEMIC.  It causes reactions in the entire intestinal region, the entire respiratory system, the cardiovascular regions, the skin etc.  This is because our entire system of mast cells have gone crazy and are genetically defective in some form.  It's very rarely that we have only a regional situation going on and it's never that only one region is always affected.  It's always several things going on at once even though one area may be more consistently affected than another.  This is what a mast cell disorder does.  What your doctor is telling you about is normal mast cells and them doing their job in a specific region.  Count yourself very fortunate that they are indeed doing their work even though you're being tortured.  The mast cells there are not the problem but the root of the problem is the infection or whatever is upsetting your mast cells in that area.   If you doctor continues to insist that there is something wrong with your mast cells then she needs to speak with Dr. Castells at Harvard.  We can give you her contact information if you want.  But for your doctor to put you through the rigors of a mast cell investigation without any basis of other symptoms showing themselves other than this regional symptoms then she's putting you through very unnecessary testing and even risky procedures for we patient have to go through bone marrow biopsies and endocscopes and colonoscopes and various other invasive procedures and scans that are expensive and exhausting!   Your doctor must have more than just a pesky vaginal infection to seriously suspect mastocytosis!!   If you wish, I"m sure you could write to Dr Castells yourself and ask her opinion as to this situation, but most doctors like to only speak with other doctors and you may not get a reply.   But please be at peace, from what you are describing, you don't have a mast cell disorder and are fortunate that it's only a stupid vaginal infection, as tedious and disturbing as it is.  Believe me, I sympathize with the torture it puts you through for I too had to bear it out for 2 full years until my doctor was finally able to rid me of it!  But since I've been through this and have this experience in working with him, and I also know the before masto and after masto changes I can assure you that there is no such thing as a mast cell vaginal disorder.  There is only a mast cell disorder and it's fully systemic and never just local within those tissues.  Even those patients who have the mastoctosis localized to their skin lesions eventually go systemic because the mast cell is created within the bone marrow, the spleen and the liver and from there they go into the various tissues.  You can not and will not have an isolated situation of only that one area being affected.  Although there are cases of increased numbers of mast cells in other diseases and conditions, those mast cells are ALWAYS NORMAL in their morphology, they are never defective.  They will migrate to areas which are being bombarded by some kind of infection or bacteria, for this is their normal role, and once that need has passed, they disappear again.  So, although you may have an increase and they may be active, it's not they which are the problem here, but something else which has called them into action.   I hope this isn't too confusing for you, for it's really a rather complex science to understand.  As Dr. Castells has told me, very few doctors really understand the mast cell and it's function and my experience has seen this to be truth! I hope this helps Lisa

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/06/11 at 11:03:47 Hi heather , Thank you :-) It has helped clarify things for me as well :-) Ramona , yeah , I have found ways to encourage the histamine and swelling to behave :-) I don't count my chickens tho ........................ It has the ability to surprise me . Its my naughty monkey . Just because I can see what its hands and feet are doing I need to be aware of what trouble the tail is causing :-) just my way of understanding things  :-) I have an epi pen within reach at all times , lounge , bathroom , bedroom and handbag . I am carciniod negative , so I know the epi pen is ok to have :-) Gibby , I wanted to ask other than this very distressing problem for you do you ahve any other problems in any other areas of your body ?? hugs Josie

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/06/11 at 11:19:50 Josie, read my post, it's #41.  I am describing another problem I have.  It's complicated.  Thanks Lisa, I understand what your saying.  I am hoping that since I am rid of the yeast, and hoping it can stay away, then this problem will eventually fade away.  In the meantime, I have my antihistamines, and I'm on the lookout of trigger foods.  I also have my special cromylyn and astroglide mixture for topical use when I really need it.   ugggg, so it was the cycloitic vaginosis. Did you read my previous post?   I thought so!!! I knew of it when you said baking soda douche.  I had already asked my doctor if I had this weeks ago.  She said NO.  Oh well, so much for the easy cure!  But I'm glad that you solved your problem!

Title: Re: Vaginal Mast Cell problem??? Post by Lisa on 03/07/11 at 05:39:37 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

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/07/11 at 05:45:02 Lisa, I know that your post took a long time to write and it is very sincerely written. I think you have some excellent advice in there. Thank you for taking time out to help here! :)

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/07/11 at 06:03:20 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

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/07/11 at 06:49:15 I think Lisa's reply was well thought out and well written. I know you may be dissapointed by the reply Gibby, and I can understand that.  Some people may even think we sometimes jump in and stop conversations--but only those that seem to go off the beaten path and dont apply to our disease. I ask everyone to remember that all of us here have an obligation to be ready to help people that do fit in a mast cell category, to find the answers they need so desperately. But, there is too much suffering by those people, if we get distracted by a condition that doesnt fit mast cell disease. Not only that, but Gibby it is totally possible that even though your symptoms dont fit a mast cell disease, (at this point) you might have something else that needs urgent attention--elsewhere... We dont want to see your health compromised by wasting time thinking it is mast cell, when you symptoms dont fit. Whatever is going on with your health, time may be of the essence.  You need testing, care and the attention of good doctors. It is also our obligation to make sure that new mast cell patients dont read posts with dis-information. Having a mast cell disorder means A LOT of reading studying and asking questions so we can protect our health. I feel it is urgent to keep "on track" and give that info out to those people. Mast cell disorders are certainly extremely rare, but we are amongst that group.. There is only a handful of true masto experts (doctors) world wide--and we are lucky to have brilliant members who are in close contact with those doctors and they help answer difficult questions. There are also a world full of people who throw up a website and call themselves expert at anything, when all they are truly expert in, is how to take your money. Having a web page does not make anyone  an expert, so beware out there. We are incredibly lucky to have our great members, many of whom are experts in areas like nursing (3 of us, Josie, Kim and me) , immunology (2 I know of, Heather and Jilly),  and some are even being followed by teams from NIH or Harvard and making written Medical history with their conditions--like Lisa! We are honored to have a masto expert as a member of this board--Nancy Gould. AND we have THE BEST most COMPASSIONATE people on the web, right here. I absolutely love and respect ALL of you. I just had to add my 2 cents and express my own opinion :) love u all Ramona

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/07/11 at 09:17:03 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.

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/07/11 at 09:47:58 Gibby we only want for you to get the right diagnosis and be able to live healthy Hon.. This is what I would do... ask for ALL copies of your labwork, see what they tested for and highlight anything out of range.. t. The havent tested for everything Hon, it just isnt possible. theyve tested for alot.. but theyve missed something--and that something is the answer... once you find it, everything else will make sense.. Now you feel you have parasites.. make them test for it!! There are tests for different ones, it IS possible. It sounds like you have a good gyno doc.. the next thing you need is a consult with a new Infectious disease doc.. maybe one that is used to more rare diseases from parasites. Have you been outside the US in the last 5 years? Where? This is the direction I think they should be following. What were the results on your esonophils? I believe that level will elevate with any parasites--and that type of disease WILL mimic a mast cell disorder and actually feel a bit better with antihistamines--even though it isnt a mast cell disease. I did a bit of searching for you, here is what I found; "The World Health Organization estimates that one quarter of the world's population suffers from chronic intestinal parasitic infections. " and "Oftentimes, when you have a parasite living inside of you, it will leech vital nutrients from the body, forcing the immune system to operate with a poor supply of vitamins, minerals, and energy sources. Parasites also stimulate the production of immunoglobulin A, which is a defender against foreign substances. Over time, this over stimulation can exhaust the body’s supply of immunoglobulin A, leaving the body susceptible to attacks from bacteria, yeast, fungus, virus, and other foreign invaders." Kinda sounds like what you are going through doesnt it??? I would at least look into it more and MAKE them run the correct tests. We had someone else here recently going through all the extensive testing to exclude everything else, his docs thinking he had a mast cell disease and guess what? He didnt, he had parasites from eating something a few years back while he and his wife were in Europe. Thats great news--because it can be treated and CURED.. thats a word we all yearn to hear :) I think youre a medical mystery LOL.. and I say that laughingly because we all feel like that here... Whatever you do find out, let us know OK...Im very curious and we wish you only the best.. Give em hell and make them find the answers for you Gibby! Hugs Ramona

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/07/11 at 10:07:56 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.

Title: Re: Vaginal Mast Cell problem??? Post by Josie on 03/07/11 at 10:17:55 Gibby , I think thats enough . I ahve a contact for you in the UK who is , in my opinion , an exceptionally openminded infectious disease specalist who ahs traveled the world . please PM me for that . I know lisa can speak for herself . But . She was nothing but lovely to you . You have no idea how she has suffered with her mast cell disease , gaining a diagnosis and how she suffers everyday from serious symptoms . as do we all . She has not trivialised your condition at all . This is a respectful forum of everyone regardless of symptoms or background . I wish you the best in finding what parasite is bothering you so badly . Ramona and Lisa have offered the same sentiments . Best of luck , we  how hard this road is . Josie

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/07/11 at 10:33:12 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.

Title: Re: Vaginal Mast Cell problem??? Post by Riverwn on 03/07/11 at 10:36:44 Gibby, I totally agree that there are many things that doctors are NOT educated about enough in depth. Especially if its rare, it doesnt meet the requirements to help enough people, so they skip over it with a passing glance during medical school. Believe me, we go though total hell with doctors and mast cells disorders, we DO know what youre going through--it doesnt mean youre wrong, it means you encountered the wrong doctor.. when they talk like that, drop them. You need to talk to someone maybe at the CDC,... look toward a hospital like one of the Mayo clinics or NIH.  They are used to looking for the often overlooked condition. You say this started about 2 years ago.. Then think back,, 2 to 3 years ago--where were you living?? Traveling?? Type of food did you eat?? Theres a connection there somewhere, you have to be a detective. Gibby I have a cousin in the hospital right now suffering from some sort of parasite that has made lesions in his brain.. and the weirdest thing is, he hasnt been out of the country, but there it is... Most doctors in the US are used to looking for parasites commonly found in North America, but not others.. There are more incidences recently that people who import food OR who have traveled recently CAN host a parasite that no one usually gets in the US--and someone comes down ill with it. Thats why you need a new doc that will look into exactly whats going on with you--a specialist who likes a challenge and wont stop until he has an answer. Gibby, I dont think Lisa was minimizing your condition. I know she truly cares for people so deeply that it bothers her whens she feels someone is not getting the right care and anyone pointing you towards mast cell illnesses was wasting your time.. 2 years is a long time for you to go through this. Just remember the average mast cell patient waits aprox 9 years for a diagnosis! SO, I strongly suggest you get a consult with a NEW Infectious Disease doctor. See who is best in your area and choose that one for your appt. Let us know, we really want you to be treated and cured! Hugs Ramona

Title: Re: Vaginal Mast Cell problem??? Post by gibby on 03/07/11 at 11:42:03 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

Title: Re: Vaginal Mast Cell problem??? Post by DeborahW, Founder on 03/07/11 at 11:48:37 Everyone, please slow down. Take a breather.    :) Okay, have you ever been in a situation and felt that everyone was reading things into statements that weren't really there? I am sensing agitation now and I actually don't think that any of you are actually mad. So, how about we close this discussion for now. If you would like to discuss a topic in this thread, please start a new thread. Thanks everyone!

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