Fezzywig,
These board have literally saved my life.
This is not an exaggeration.
My doc's caught the CIVD.
This site helped me understand and calm down about the side effects of this treatment. The other health issues are what were on the way to ending my life.

If it was not people who started sending private messages and continued even while I dismissed their opinion in a respectful manor, they kept pestering me. I just did not see what they could see because they had the experience and knowledge.

I was literally in bed with pull-ups 24/7 for around 2 years.
During the 2nd year, it did not look like I would make it.
I had become so ill that finally one of my sisters was in tears and insisted on going to my doc with me. My mother was in agreement.

Another sister would come over and drive me and push me in a wheelchair because just riding in a wheelchair wiped me out.

If people from DS had not been persistent with their knowledge and compassion, I would be in the grave.

It was DS members who knew I had Celiac Disease and Dairy Intolerance. Then someone else knew I was carrageenan intolerant. The carrageenan almost took me out. That is just a thickener and stablizer in non-dairy milks.

ALL of the above caused me severe chronic dysentery.
I was in and out of the ER due to the dysentery.
My blood pressure was way too low and my heart rate was too high due to the dehydration. They kept sending me HOME and I knew I was dying and so did the people in my life. Not one professional had a clue as to what was happening to me.

DS members saved me and told me how to help myself over and over until I could listen and accept what they were saying just long enough to try the dietary changes long enough to know if this would change the out come of my impending death.

Well, each person was correct.
I cannot have any dairy, gluten, any forms of wheat or anything grown near a wheat field and thus using the same water to grow the food and then carrageenan.

Carrageenan is a form of seaweed.
Strangely enough, in the past I ate seaweed soup and loved it.
I don't know if I can eat that or not, although, it is likely that this is no longer an option. It could be that carrageenan is too processed for me to eat.

That is another issue.
I cannot eat highly processed foods or I will be back in the bathroom.

If you are experiencing any of these things, this is a heads up that you may have these additional health issues.

If you keep having chest pain:
If you keep experiencing esophagial spasms:
If you have pain that goes from your chest to your back:
If you experience the above and you do NOT have heart disease, This is likely a food intolerance.
Dairy alone will do this to me.

Lactose is not the only thing that can cause this issue.
I did not know this and I was drinking lactose FREE milk.
At first I did very well.
Then it came back.
Someone HERE on DS told me about Casein.
This is the protein in milk.
Now, the allergy is so severe that I cannot have any form of dairy except milk, margrin and butter.
I do know others who cannot have dairy butter or margrins.
I now cannot have mayo either.
Someone told me about VEGGINASe or spelled similar to that.
She said it tastes like real mayo, so I plan to purchase it.
This will allow me to have more freedom with casseroles and sandwiches.

As for the CIVD alone....
Recently, I've had a fungal infection on my face.
One part has been all around my right eye.
One part has been around the side and below the right nostril.
One part has been around the left side of my mouth and down to my chin and spread to the center of my chin.

I did an IVIG treatment along with using and anti-fungal cream.
Well, I was not getting a lot better until I had the IVIG yesterday.
It's almost completely cleared up from ONE treatment.

This gives an idea of how this disease can ravage our bodies.

I know someone talked about not making their kid take IVIG unless she starts getting ill. I know the intentions are good. I also know that if this kid starts getting sick she will always struggle with getting sick. The important thing is to get treatment BEFORE you have symptoms. It's too bad that most of us are diagnosed AFTER we are so ill. It's great that more allergists are testing for this before the patients are ill. Those are the people who come here screaming and protesting because it sounds crazy to them because they are NOT YET ill.

Then we parent them into accepting and getting treatment.

Yep, Fezzy, it's like a family isn't it. :)

This is a wonderful place to help us help each other to live as much as a fulfilling life as possible.

GOD bless everyone!
Animal

Hey Fezzy,
What other deficiency do you have that is not treatable?
I'm very curious.
You may be able to give us more insight/education about what is happening to some of us on this board.

Sometimes, people don't say anything if they think it is not related to CIVD specifically. I know that happened with me.

Do tell.
:) Animal

Animal,
I had my IVIG 3 days ago and I am now sicker than I have been in weeks. I am considering the ER as much as I HATE it. My symptoms this go-round are bad upper abdominal pain and swelling, dizziness, sweating, and ridiculous fatigue. I am also having trouble catching my breath. Just walking to and from the bathroom exhausts me. I am trying to figure this out. I am not overweight.

Dr. told me last year that I do have a hiatal hernia but not to worry it is small. I'm worried now. It feels like that is what could be my issue now. Anyways, I probably just need to go. More germs... It is just so damn discouraging. Sometimes it just doesn't seem to matter how good I treat myself, it's all a big farce. Everytime now that I start to get really sick, I feel like this could be it.

I have zero IGM counts, and very low IGA. I have interstial cystitis, vulvodynia, GERD, osteoarthritis that cannot be treated, IBS, lots of UTI's that never seem to go away no matter what I end up taking. A few months ago I go so ill from what started as a ferocious uti that I went septic and almost died. I was on IV Levaquin, the only medication that was going to work, for 5 days and then on very high oral doses for weeks to get me better. The high doses of the Leaquin tore the tendons in my arms and it took me months to recover. I could go farther, but it is depressing. There is allot. I guess the thing that worries me most is no IGM.

Right now it is big time abdominal pain and swelling, dizziness and new shortness of breath. That is scaring me and will probably be the issue that will take me to the hospital.

On my last dr visit he told me that I have low blood sodium levels. He said, oh that's from the dieuretics! I don't take any though. So I'm not sure what is going on with that, but it concerns me now with this new 'out of breath' thing is hitting me.

Well, I apologize I have gone on far too long. I needed a vent I guess. Today I do feel like I am losing this fight. I will post back after hospital trip this morning.

Thank you for asking 'animalheadbutts'. Probably got more than you bargained for.

Let me ask one thing though if any of you know. With zero IGM, what does this mean in the big picture?

Thanks and warmest regards to all.

Animalheadbuts,

You said, "
I know someone talked about not making their kid take IVIG unless she starts getting ill. I know the intentions are good. I also know that if this kid starts getting sick she will always struggle with getting sick. The important thing is to get treatment BEFORE you have symptoms. It's too bad that most of us are diagnosed AFTER we are so ill. It's great that more allergists are testing for this before the patients are ill. Those are the people who come here screaming and protesting because it sounds crazy to them because they are NOT YET ill. "

Thank you for your advice, however, we have chosen this course of treatment / non treatment with the advice and council of my daughter's medical team. Only after you have your MD degree, have had a fellowship in immunology at the NIH, served on the immune Deficiency Foundation's Medical board of advisers and had a Jeffery Model Foundation center named for you will I follow your advice rather than my daughter's physician.
I asked you several day ago for any research that shows delay of IViG in an asymptomatic CVID patient has any negative results and have not seen a reply.
Please, everyone on this board, we need to be be very careful for to label person opinions and our anecdotal evidence as such and only report proven medical certainties as facts.
I have been treated for CVID for over 29 years, over 350 infusions and believe I understand our illness as well as most people.

markincleveland,
It appears you took this personally.
It appears you are very upset.
This is your right.

It's also my right to say what I believe.
This was a general statement of my view of handling this issue.
I know I did not use your name or direct this towards you.
Each person on this site expresses him/herself freely with the agreement to not be offensive.
I think that is exactly what I did.
Others feel/believe the same.

You are not required to take the same position in you life.


I did not check up on studies, that is something you can do if you have an interest in doing so.

I am surprised you are directing your upset towards me.
I know we all have rough days.

Take care,
Animal

Mark,
This is what you said disrespectfully of the other members of this board.
Reply #16
I beg you to realize that for the most part the only people who chronically post are the very ill ones who have nothing else to do and are emotionally consumed by the illness. Take what you read on those sites with a grain of salt.
Fee free to contact me if I can be of any assistance. Who is you doc in New York?
good luck

I don't know how you feel so darn special to suggest that people dismiss the folks who have been so ill from the CIVD and thus have a load of experience.

Now, you are telling people all about doctors in TX.
Guess what Mark? Everyone is not moving to TX that has this illnes.

Yep,I'm really upset with you.
I don't normally say anything strong to people but you are just way out of line.

There are good doctors in EVERY state.

Do NOT disrespect the people who write on these boards and suggest we have NOTHING better to do.

Gee, you must not have much to do in life.
Here you are posting lost on this board where you are NEW and i"m wish you would leave.

You are on the board of another website.
Do you not have enough to do?

I have LOTS to do and I make time to post.

You don't have much experience in fighting illness.
Your primary experience is getting infusions and typing.

How about if you stop dismissing other peoples experience and knowledge.

Animalbuttsheads!!!! Hooray for you, I read that post, and I felt sorta belittled. First of all he is a big CEO of a company, his kids are going to Ivy leauge colleges, and for the most part very successful. Which is wonderful, great, kudos, And yeah, for the most part I have no where the problems RIGHT NOW that some other people struggling do. But how dare he, he has no clue what you are going through, all the research you have done, the courage to keep going and trying to help yourself and at the same time helping to inform others with this disorder. This CVIDS has caused me to have to humble and HUMILIATE myself to receive government aid. LIKE I WANT THIS!!!! I for one appreciate all the advice you have given, I learned that I wasn't the only one having the skin fungus stuff, I was putting the wrong medication on it. Somtimes these posting boards are very important to people. Me for one. Nobody was around for me when I was chronically sick all the time, so sick that I thought it was all in my head, so sick with pneumonia thought it was all in my head and took a tranquilizer to put me to sleep. Until a nextdoor neighbor who was an RN took ME TO to E.R where I was diagnosed. So if I can help anybody who is newly diagnosed to reLIZE they need to do certain things to help themselves, then I feel better, because so help me God I WISH I had somebody to help me when I needed it. You are a asset to this posting board. and p.s. I LOVE THE PICTURE OF THE PONY AND CAT, WITH THEIR WINTER COATS!!!!!!!

Dear Princess: Yeah like EVERYTIME I go up to morro bay I come back with a raging sinus infection. And guess what the last time I was up there my friends rental house WAS FULL OF MOLD IN HER BEDROOM!!!! And her and her husband were complaining of headaches and sinuses, and sure enough she found a bunch of mold. I swear, cold, fog and going from hot to cold just makes my sinuses CRAZY, turns into sinus infection, turns into ear infection, tonsil infection. so i try to stay away from the culprits. Give me your bosses name, i'll tell him your not lazy or crazy!! ha ha.....

STIMPYYYYYYYYYYYYYYY!

YOU MADE MY NIGHT!

Here I am working from home with excel changing figures from whole sale to retail prices. I have no experience with this excel because this is a new business adventure. I'm tense since I'm new at this as of tonight and wanted my work done before morning so my business partner can do her part with the data tomorrow.

I certainly am not earning any money yet, but I am doing one thing.
I'm WORKING.

(Oh wait...... I don't have anything to do?) Oops, that was bad or was it just a little passive aggressive stand up tall behavior?

I'll go with standing tall.

Dang, I don't care if I work as a volunteer or for mula.
I just want to work and keep a focus.

Anyway, here I had been so offended by Mark's brash dismissal of the people here and NOW? Well, I'm feeling good about life again
just because you said something supportive.

Are you wonderful?
YES!

I think Mark wants to be more important on this board than he is for now. Disrespect will never make you move very far into other peoples lives.

Thank you for respecting me and thank you for sharing and just being YOU.

Hey, respect without big money? Who ever heard of that?

Oh yes, about the pic.
I found it somewhere online and fell in love with it.
I'm the pony and there's my little girl kitty. LOL

You should have seen the fur on my huge 20 pound boy and his enormous mane. He could not even clean himself due to the mane and the fur being so terribly long.

I shaved much of him but left fur in the right places so he can be warm enough. He also has a heater, warm beds, 1 heated kitty bed and my bed is heated. Then they have 2 tall climbers and a little post. They are my spoiled babies.

Do a dance sweetie :)

Hey Stimp,
Was this just recently that you have fungus on your face?
That's what I'm trying to get rid of right now.
The infusion on Friday has helped it a lot.
I still have to put anti-fungal cream on it too.

I'm so glad this info helped you.

The people on DS have helped me so much and the ones on Celiac Disease literally saved my life.

I've had some powerful help from RN friends in my past too.
It really makes a difference when community caring people online or off line share.

I don't know if you are well enough or if you even want too.
I learned about a homeless shelter that has been around for a long time. They have volunteer positions open.
I want to help simply because I'm grateful not to be homeless.

Animal

Finally, I am done with my work!

Stimpy, if I am around mold, it makes me so darn sick it's unreal.
Do you also get nauseated if it's just in a dish or in the fridge at someone's home?

If someone has left something for a couple days soaking and it's become stinky, it will make me feel ill.

When I was younger, in my 20's, I could not live in a place that had old carpet or an old gas heater. I would get so ill and end up in the hospital over and over.

I remember one place I was living and returned to finish high school due to illness making me short of some credits.

Anyway, I remember living in an old little efficiency flat.
It had the old carpet and old gas heater.
I got pneumonia from it and had to finish my school work in the hospital. Since there wasn't anything to do in a hospital, I was able to finish my school work 2 months early with A's.
That was worth getting sick even though it was not my plan.

I moved out of this place a short time later and the new place was electric central ac/heat with a roomy.

I had another benefit.
The JC I attended had a Respiratory Therapy program. So the students wanted practice using percussion. In those days they still used that a lot when someone was full of gunk. Now, it appears they only use it on people with CF.

Anyway, while I was attending this college and getting percussion daily; I didn't get one infection in my chest.

That sure taught me a lot.
Now, I own a vibrating vest.
This has helped to keep my asthma stable too.

what's a vibrating chest? I used to get percussion daily, and even now my boyfriend sometimes does it for me when I'm having trouble. I will find out today whether my 3rd CF test is positive or not. (I'm assuming not, but it's the first time I've had the genetic one). I used to wish I had inversion boots so I could just drain myself...

My doctor gave me an "Acapella" device (AKA pulmonary toilet) that I breathe into and it makes me cough. It seems to help a lot in stopping the constant shortness of breath.

As for mold, it makes me very very sick. The place we lived in Los Osos had a leaky roof and I would find mold growing up furniture legs. I did what I could to stop the mold that I could see, but when we finally moved out (thank God!), I found black mold behind every piece of furniture that was against the wall! I often get dizzy and nauseous just from short exposure to mold. I don't have many allergies left, but my allergy to mold is still here.

Princess

p.s. Congrats on work, Animal! :D

Vibrating VEST not chest silly.

I believe I left some links on a post for them on Amazon.
When you do a search for a vibrating vest, you must use the term MASSAGE or you'll find nothing of what you are looking for.

My God Animal: You are the strongest, most couragest woman I have talked to in a long time, when I hear about the ordeals you have been through, and have fought through I am so proud of you. I thought I was going through t he sh@ts!!!!! I too, know what it is like to be close to being homeless with no healthcare. God could you imagine? People really don't care unless you scream and yell and become your own best advocate!!!! I am so fortunate to be in good health now, no doubt, you will get well enough to start going on some small hiking trips. No, don't get the fungas anymore, but I put hydrocotizone cream on it to keep it at bay. I sure hope your taking 1,000 mg. of Vitamin C daily, as this repairs your lung tissues, my immunologist told me this. Your new job sounds interesting, oh gads, excel!! I took 2 classes in that, and yeah, it takes some time getting used to. Kudos to you for starting something, I am in the same boat you are, people need a purpose, especially if you have a brain. I am going to see about volunteering at a humane society, or homeless shelter. Anything no matter how small that helps mankind helps. When I hear your stories about what you have been through it helps me because I now know that I have not been the only one. To not have money, or health insurance and to fight this disorder, God I almost gave up. Glad I didn't.

Awe now STimpy, you made me feel good. :)

ROFL, the Excel is funny cuz I have no education in it so I had to do everything the long way since I did not have time to look up how to use it corrrectly. Hmm, it just dawned on me that I may have a book on it.
I needed to multiply all figures by 2. A lot I could do in my head so that works.

I'm sure there is a simple formula that would do it instantly. I just don't know what the formula is yet.

Hey, when you do start volunteering, let us know what you are doing.

I want to volunteer for the homeless where they do the foot washing and bandaging their feet and then putting on clean dry socks for them.

Can you imagine how good that would feel and how grateful when a person has had to walk so much? It's got to be a treasure. They have a foot washing program here in my town.

Stimpy, if you were ready to give up, you had to be VERY ILL.
That is how people get to that place in life.
It just has to become too much for a person to give up.

I think some people don't get it that it is more than a job loss.
We lose everything, job, career, finances, way of living, homes, cars, freedom, medical coverage, doctors, friends and even family often backs away from those who are very ill.

The only ones in my life that have not backed off are my cats.

I hope you had a fun day :)