HOUSE

[colormist]

I was watching HOUSE last night. The group came to the conclusion that it was the patient's vegan diet that was causing her illness. Malabsorption came up, then they said "Wibble's Disease" or something that sounded like Wibble's disease. I tried to google that name, but I must have the spelling wrong.

Just thought it was pretty awesome that malabsorption was part of her illness. Of course they didn't go into details about it--which would have made me marginally happier--but I'm content with a vague mention that fruits and vegetables nearly killed this lady.

[Deb Mc]

I'm not familiar w/"House", am assuming it's a TV show??? "Whipple's Disease" is caused by a parasite and if left untreated it can cause neurological impairment, muscle/joint problems and other complications, and be fatal, just like HFI. It's one of the things my son's most recent neurologist suspected and ruled out.

Deb Mc

[Deb Mc]

Are you sure it wasn't the vegan diet itself causing her illness, and not the fruits and veggies per se? Long-term malabsorption can lead to malnutrition, as can a diet deficient in protein and micro-nutirients.

Deb Mc

[Tammy]

Oh Laura, that's so cool. I love House. I have it taped from this week, but didn't watch it yet. I will do that tonight. Since the last couple of weeks were re-runs, I wasn't in any hurry since I didn't know if it was new or not.

And Deb, yes it's a TV show, about a Dr who diagnoses very strange problems. We're in Season 6 in the states. In Amsterdam they also show it, but they are a couple of seasons behind us. My son gets mad when I tell him what's going on that he hasn't seen yet. lol.

[CJSculpts]

House is also available on Hulu. It's funny because I usually wind up watching it delayed a week on Hulu but watched it live last night which make Laura very lucky....spoiler!

Every other episode of House (also of Mystery Diagnosis) feels like it is going to have malabsorption as at least one of their rule-outs but this is the first time that I have seen it come up. It was Whipple's digestive.niddk.nih.gov/ddiseases/pubs/whipple/ which can create malabsorption. Funny, it has been bothering me lately that, in 20 yrs of seeing a GI doc, I have never had an endoscopy. Oy.

Deb, I am going to reiterate Fred's earlier invite. You can join the group without disclosing personal info. This will allow people to communicate with you better. They can search for posts that you have left previously and they can send you private messages.

I have not been posting for awhile due to frustration with my Dx & docs & because I have some insane business issues keeping me occupied. My symptoms are somewhat similar to yours, Deb, and would comment on your request for DX specifics compared to symptoms but by then I will not be able to find the thread very easily.

[Deb Mc]

Mar 9, 2010 13:23:52 GMT -5 CJSculpts said:

Every other episode of House (also of Mystery Diagnosis) feels like it is going to have malabsorption as at least one of their rule-outs but this is the first time that I have seen it come up. It was Whipple's

So it was Whipples causing her illness, not the fruit and veggies. Now that makes more sense. I'm not familiar w/the show, don't watch much TV.

Funny, it has been bothering me lately that, in 20 yrs of seeing a GI doc, I have never had an endoscopy. Oy.

It probably depends on presenting symptoms. My son's had two, one to investigate unexplained chronic projectile vomiting, and the other was done more recently in conjunction w/a biopsy due to chronic inflammation of the colon and malabsorption.

Deb, I am going to reiterate Fred's earlier invite. You can join the group without disclosing personal info. This will allow people to communicate with you better. They can search for posts that you have left previously and they can send you private messages.

I don't generally bother w/membership to these types of forums for a number of reasons; mainly because every time I do I get bombarded with a new wave of spam. Plus I don't tend to hang around very long due to difference in interest. Despite finally having a definitive Dx, I continue on w/my neverending search for answers and that entails moving on to till new ground (that's the farmer in me <lol>) where countless stones remain unturned. Now that I think about it, I don't really fit in here anyhow. Anyone else subscribe to a "no fructose" diet???

So sorry if my participation as a guest has inconvenienced anyone - not my intent at all.

Deb Mc

[CJSculpts]

IMOO, it's not an inconvenience for us just that you might get more out of it for yourself. I did not get any spam related to this site.

I do not recall anyone being 100% no-fructose but everyone has varying levels of strictness here based upon their own reactions & levels of tolerance to reactions vs. tolerance for restrictions. I am petrified at the thought myself. I have been eating bout 25 ingredients only for the past few months & it is difficult enough. Waiting for final DX before adjusting further either way.

[Deb Mc]

The point I was trying to make is that I have very little in common with others here. And isn't that the reason most folks join a group? To connect with others who share common interests? Would you join a group where you don't really fit in?

My personal goal is to bring the flip-side of HFI to light in hopes of increasing physician awareness so others like us can be diagnosed and treated in a timely manner, before they develop complications such as ours.

And that's why I visit this site, to see if there are other flip-siders out there, as that information will help me decide how to proceed. And if I cast some seeds in the process, perhaps they'll grow into something helpful to others. So my visitation stands to be mutually beneficial.

I don't accept, "but the literature says..." as an answer. The literature is obviously incomplete to say the least.

Good luck w/your final Dx - hope it's definitive.

Deb Mc

[colormist]

Sorry I spoiled the ending for those few of you that hadn't seen that episode yet. I just wanted to get the name written down before I forgot.

They didn't go into detail about the diagnosis. They progression of dialogue was something along the lines of: "that's crap... crap, crap... HEY! What's your poop like you partial-vegan?? Ah-ha! MALABSORPTION!! That means... Whipple's Disease!! Yay! You're not going to die!! We're so smart!"

I checked the records on HOUSE to see if malabsorption had ever come up before. This looks to be the first time. I think if the show stays on the air long enough, eventually they'll come across HFI. I'm keeping my fingers crossed.

[Deb Mc]

Mar 10, 2010 12:24:28 GMT -5 colormist said:

I checked the records on HOUSE to see if malabsorption had ever come up before. This looks to be the first time. I think if the show stays on the air long enough, eventually they'll come across HFI. I'm keeping my fingers crossed.

Mystery Diagnosis has expressed interest in doing my family's story on HFI. I'm supposed to call the contact back after we get my son's fructose assay results. The prescribing doc has to agree to be interviewed, though. I plan to ask him at our follow up. I already checked w/the atty we're considering and he said no problem, go for it if we so chose. I think it would be great way to increase public and physician awareness in bringing the flipside forward.

Deb Mc

[charlie]

Hi Deb, don't give up on us. I think like the others we just thought you could use the info on this site better if you join up and also if there is any interesting comment that you make we can then private message you on this board for more info rather that clogging up the postings, or just occasionally we send a private message to cheer someone up or enquire how they are getting on with someone, it only comes up when you open this proboard, it doesn't go through to your private email so it shouldn't intrude.

I don't think I've had any spam at all, I think Laura said ages ago she only got some when she left her private email on her details but you don't have to put it down, we can get hold of you through this board.

Now on your other point, you're not like us!!!! Sorry but no one on this board is like anyone else as this HFI lark seems so hugely variable, but there are common factors that everyone can share to create a bigger picture. You do seem to have alot going on but to be honest your symptoms are no worse than anyone elses have been at times on this board and it is only through sharing experiences that we can start to be clearer about this problem. I don't have HFI my daughter has and she is too young to explain how she feels but others write of problems they experience and it has been a life and sanity saver for me. I'm sorry if I sound sharp and uncaring but it sounds like you are putting yourself in a bracket of your own and the good thing about this board is YOU ARE NOT ALONE, some of what you have everyone else does and the support from this board is overwhelming so please stick around.

Charlie

[Deb Mc]

I beg to differ, Charlie. I'd ask if anyone else on this board has been Dx'd or misDx'd with mitochondrial or metabolic myopathy, EDS III, white matter changes or strokes or toxic encephalopathy - all of which resolve upon eliminating *all* forms of fructose from their diet - but wouldn't want to clog up your chit chat with the typical no response to my information query. <lol>

Thanks for the invite, though, the third now. But again, I'm looking for info, not emotional support or entertainment. And I don't believe anyone on this board could even remotely relate to the flip-side of HFI, at least not yet. I think my docs may be right, that my family has a new variant. OTOH, I'm still leaning towards the fructose poisoning saturation theory - oh, sorry. Forgive me for going off topic once again. I just can't stay on track and chat.

Now how does that saying go??? Oh, yah! Three strikes and I'm outta' here.

Deb Mc

[Tammy]

hehehe Laura, that sounds like the ending to EVERY House - with just a few words changed. But I do still love the show, and this one is really cool.

Oh, and for the non-house fans, there have been a few episodes where they didn't end happily, but not very many.

[CJSculpts]

Well, Deb, if you are true to your word, you probably will not be reading this. I almost said "hearing this" but you clearly have not heard a single word that anyone has said/typed to you.

Wow, yes, you are truly a spectacular and amazing medical anomaly!! You are absolutely the only person on this board who has a unique reaction and a variant to ...oh, wait...multiple people have explained to you that we all have different reactions. Oh, and you are the ONLY one who has had to have a biopsy to be Dx'd...oh, wait 20% of the gene's haven't been mapped by BU yet. Geez, how would they know that if other people were not in the same boat as you?!

If you had stopped being so self-absorbed and paid attention to anything that anyone was saying, you would have heard that other people have had similar symptoms to yours or that other people have been misdiagnosed with just about everything on the planet. You would have also heard that the reason to join would be so that people would be able to find the post with your oh so important questions more easily so that they could reply when they have more time and/or more answers than they can supply you with now.

Why would anyone want to open up and share information about a personal health issues with someone who comes sweeping in on a broom stick with a nasty attitude? I can't speak for the rest of the members but I personal avoided engaging in discussions with you for the most part because you seem to be just a bit neurotic. Normally I cringe at the thought of characterizing anyone's symptoms as psychosomatic but there definitely are people who exaggerate their illnesses with such overly dramatic, woe-is-me personalities.

Maybe the reason that you get nothing from boards like this is that you give nothing. People on this board support each other by sharing information on what works and doesn't work. They understand that every story is unique. No one's pain and experiences are more important than the next persons. We may disagree with each other at times but at least we have the decency and dignity to treat each other with respect.

I know that others here are just too polite to say it but I have zero tolerance for B.S. Don't let the door hit you too hard on the way out.

[charlie]

We get House here in england but I've never got into it, maybe I'll start, probably miles behind you guys in America so I may yet get to see this episode.

Just got addicted due to Megs insomnia to CSI so not sure if will have time for House as well. I'm surprised there is anyone left allive in NY and Miami mind.

Sorry to drivel off the subject but there you go, in that sort of a mood!!!

[julienc]

Wow - looks like I've missed a lot in the past week or so! (Busy work load lately.)

Ah, the irony of accusing members of an HFI board that they do not even remotely understand what it is like to live a fructose-free life.

Deb (if you read this), I truly am sorry for the medical problems you and your family are experiencing. I hope you can get the answers you need.

ETA: Maybe I should give HOUSE a try - seems to be getting some good reviews here. Is that Hugh Laurie? I've been watching Monsters vs. Aliens endlessly with my son, and he's the voice of the cockroach (with British accent). Great film, btw. Lots of laughs.

[Tammy]

Horray! Horray! I'm not the first one to speak my mind about Deb this time. lol.
I did - personally through an e-mail - explain to her that Regina also was DX'd through a liver biopsy, her blood work came back negative from Dr Tolan and also had physical problems. Isn't this what she's asking for? People in the other 20%? (I don't like "flipside" we are all HFI, just some gene mutations already found and some not)

When she answered me and tried to tell me what to do for her I replied that her damage is done, we have figured out what does and doesn't work for her, and how helpful this board is to everyone, including me, I got back a nice, but sorry this isn't what I want e-mail.

Again, woe-is-me no one is as bad or can understand what I go through. And when I do find someone else, I will help them by telling them exactly what to do and they better do it exactly like I do.

[Kelly Grace]

Hello Everyone,

Chuck and I pop in now and then to read what's happening, just wanted to respond to the thread.

As most of you already know, our daughter was diagnosed with HFI at 3 months of age. It was a very scary experience. All the doctors thought she was a goner, but our little angel pulled through! When they (the doctors) were going through the "laundry list" of things that "might" be wrong with her, one doctor mentioned a mitochondrial disorder as well. It was ruled out when our Dr. stumbled upon HFI. She was positive for one of the HFI genes (tested at BU), and we have kept her on a strict HFI diet ever since. She's doing great. She gets her blood checked every 6 months, and all of her tests come back fine.

She is in Kindergarten now, and at times she tells us that she wishes she could eat what Charlie eats. Charlie is her twin brother. He was tested, but his tests came back negative. He follows a "regular" diet and is fine.

I give her "her" versions of everything that he eats ... pizza, ice cream, cakes and cupcakes. Was wondering if anyone else went through this with their little one, and how did they handle it?

And to CJSculpts, you rock sister!

[CJSculpts]

Oh, Charlie, if you have not starting using Hulu or Netflix live streaming...

[CJSculpts]

Hmmm... can't decide between a deep, sweeping bow or a teeny, little curtsy...I'll do both!! {{{{{Wooooooooosh...ting}}}}}

Hey! I just noticed that I've earned my second star! ((Shineshineshine)) I kind of feel like I got my first baby wing!

Tammy, I was kind of staring in amazement last night that you post totally ignored Deb's rudeness. You are normally pretty quick to chime in. I also got a bit of a chuckle when my eyes lit upon your god status..."Did she just say THAT to a god?!?! Oh, no she diddant!"

Thank Kelly. Maybe someday I can gain even more rank here and then I'll be able to shoot lightening bolts out of my fingers. <<ptchoo ptchooo>>

heheheheeee