Has anyone here ever had an interesting disease?

[AngryAmish]

I have not had anything strange, like beri beri etc.

I do have occaisional bouts of epilepsy but not too often.

Tell me about yours!

[Liberal Veteran]

1. Does AIDS count?

It's interesting in the scientific sense or in the sense of the old curse "May your life be interesting".

In one more year I will have survived HIV for 20 years (and full blown AIDS for over 5 as of this year.

[Taverner]

5. Congrats on the 20 year victory!!!

And congrats on surviving FBA for 5!!!

[iconoclastic cat]

7. Sweet freaking Shiva!

I had no idea, Lib Vet. Not that your health is my business. No wonder you have so many cats: good vibes central!

[FizzFuzz]

12. wow, you are a survivor!!

Keep on man, we need you!!
:hug:

PS. How do you deal with all the fuzz? I mean if you're lazy, and can't put up with vacuuming every 2 days like you really should. Sometimes ... my hypothetical friend...*ahem*...gets tired of picking the fuzz off the honey. And her hun isn't too crazy about it either. Advice will be ..uh .. sent to my friend. ;)

[Liberal Veteran]

52. I vacuum EVERY day.

:)

[FizzFuzz]

61. that is SO not what I wanted to hear.

x(

[Starlight]

157. Me neither.

You have a lot more energy than I do, apparently. I vacuum approximately, uh, never. :o BF gets really tired of cleaning up after my cats. :(

[arwalden]

82. Cateracts... but is that a "disease" or a condition?

[La Lioness Priyanka]

17. i dont want to say i am sorry cos that may sound patronizing

but i am glad you have survived. i am also deeply sorry you cant get legally married.

pri

[LiberalinNC]

29. Congratulations!

You are amazing!

And I thought I was doing pretty good having survived breast cancer for 11 years (was diagnosed at age 28).

Once again, Congrats!

[babylonsister]

126. I'm going on breast cancer survival myself, will be 21 years;

diagnosed at 27. Congrats to you!

[FizzFuzz]

132. and congrats to you...hit with breast cancer at 28, wow.

:hug:

[Shananigans]

196. My cousin is on her third bout, diagnosed for the first time at 27...

she now has stage three....so sad..

[American Tragedy]

31. You must be made of very strong stuff to have endured that

I admire you. :hug:

Incidentally, do you do regular strength training? It would probably benefit you. The process of breaking down and rebuilding muscle tissue that occurs in anaerobic exercise is often good for combating serious chronic illnesses like cancer or viruses. It may even increase T4 cells, T8 cells, and natural killer cells.

[JanMichael]

58. Damn. That's it, damn...

Perseverance brother, perseverance.

Keep up the resistence.

[Liberal Veteran]

62. It's not all that bad...

It just takes an enormous amount of willpower to be 100 percent compliant with my meds. In 5 years I have missed exactly 1 dose. That means never sleeping late and always having a clock around.

[FizzFuzz]

64. It's little things like that that people who don't live with disease don't

know about. Thanks, I appreciate that small "window" into what you do to keep up with it. Every day adjustments which are the kind of thing that "the rest of us"(sorry, I couldn't think of a better phrase) never hear about.

[JanMichael]

80. I'm glad to hear that. Here's a weird question, are you in a special...

...group of HIV survivors?

20 years is the approximate time since it became well known and you've kicked it's ass.

Frankly I'm impressed.

[Liberal Veteran]

91. I'd say I'm in a special group called I like to call..

..."lucky as hell!".

I got infected by a cheating boyfriend in the mid-80's. Thought I'd managed to dodge the bullet, but didn't realize the test at the time was too soon to tell I'd been infected (took the test a couple of weeks after breaking it off the jerk who was sleeping around on me).

I went on with my life and found out about 14 years later that I'd not dodged that bullet after all.

I guess looking back at it, there were signs that I my body was fighting something.

In the fall of 1999, I got a bad flu that wouldn't go away and got hit with the triple whammy as it were: a diagnosis of pneumonia, HIV+, and AIDS (plus a nasty case of thrush and angular chelitis).

I am sorta at the upper end of the progression track. 10 years is the AVERAGE time from infection to AIDS without treatment. I suppose I held out a bit longer than most. I was able to backtrack my sexual partners (which really are just a handful) and surprise, only one was HIV positive (and died from the disease in 1991) and it was the one who cheated on me.

In many ways it's a blessing that happened the way it did. I missed the early approaches to HIV that left many people with a lot of side-effects and monotherapy/dual-therapy approaches.

The problem with the drugs is that many times becoming resistant to a single drug can cost you to lose the whole class of drugs (Right now there are four classes: Non-nukes, nukes, protease inhibitors, and entry inhibitors). Become resistant to non-nukes, and you basically
lose the entire class although some newer non-nukes are getting around that, but you can see how earlier failed approaches to therapy before what is known as HAART (highly active antiretroviral therapy) aka combination therapy of three drugs, could have been bad news leaving me with multiresistant virus before effective therapy was found.

So in a sense, while it was unfortunate that I didn't find out sooner and gotten treatment before a diagnosis of AIDS, at the same time it was good that I was able be treatment naive at a time when effective combination therapy came into play.

The downside to waiting so long is that it was a long crawl back up to a semblance of a healthy immune system. I had 22 t-cells at the time of diagnosis (in perspective, the average is 500-700 and you are considered to have full-blown AIDS when it drops down to 200 and anything under 50 puts you at extreme risk for EVERY opportunistic illness out there).

In the first year of therapy I my t-cell count climbed to around 100 and my viral load is undetectable (meaning that it is beneath the threshold of detection to the current tests).

In the second year, I worked with my doctor to have him prescribe an experimental treatment to boost my t-cell count. It is a bio-engineered product called interleukin-2 and it is a chemotherapeutic substance approved in use for advanced renal cancer, but has use because it causes multiplication of tcells. In early years it wasn't much good because not having a viral load under control meant it just made matters worse. Now however, a person with a controlled viral low can take low dose IL-2 and get a certain rise in t-cell levels. Whether they are effective is still up for debate and it is already approved in France.

The downside to that therapy is that it is EXTREMELY expensive. It is given for 5 days every 8 weeks twice a day by subcutaneous injection. I had to learn how to reconsititute and inject myself with the stuff. Each course costs around 5000 dollars (thank god my insurance paid that or I'd never have been able to to do it). It also makes you VERY ill for the last two days of the course. The last two days is a constant battle to keep your body temperature in normal range and you feel like total shit. I'd start a course on Wednesday and be feeling pretty bad by Friday at quitting time at work. I'd usually take a sick day that Monday to recover. The upshot is that the symptoms resolve within a day of stopping the treatment.

So that got my tcell count over 200 so I could stop taking prophylaxis antibiotics.

It was not pleasant crawl, but I intend to beat this thing or at least let it know I put up a good fight.

[JanMichael]

93. Amazing story. Thanks for the insight.

It's a good lesson about treatment.

You sound like a fighter. You've also just saved my wife grief. The next time I get sick my usual whiny bitching is gone. If I have to bite my tongue clear through, I'm keeping my trap shut.

Have you documented your experience with this affliction? If not I would suggest you do:-)

[Dear Maggie]

99. I want to ask you about the flu

You said, "In the fall of 1999, I got a bad flu that wouldn't go away"

Well, on top of the fact that your resistance could be down from a 1991 exposure to AIDS...

Could it also be the commonly held belief that flu symptoms mean the flu ... & instead it means another exposure to something, such as the commonly used chemical, 2-butoxyethanol?

Anyway it was one of the chemicals the gulf war troops in 1990 were exposed to; it is a neurotoxin; it causes all of the 'gulf war syndrome' symptoms; and it has not been studied. www.valdezlink.com/same.htm

But in the general population people would call it by its civilian name: Chronic Fatigue Immune Dysfunction Syndrome or CFS

I have recently started to wonder if SIDS is the same thing for little ones: their liver shuts down; their other organs shut down ... and guess what? they stop breathing.

The reason I say this is because the worst exposure to this chemical is fumes into the eyes; and 2nd hand exposure is pretty easy to get.

When they say the troops have the flu ... and need a shot for some virus ... I say, well, maybe they are being poisoned again. I believe we are poisoning our own troops with a common cleaning, degreaser chemical

Baby & 2nd hand exposure http://www.ragereport.com/phpbb/nfphpbb/viewtopic.php?t=4992

What about SIDS? http://www.ragereport.com/phpbb/nfphpbb/viewtopic.php?t=5003


Headaches can be part of its harm. Even children can have HORRIBLE headaches http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=228&topic_id=347#1184

So I ask you ... what were you doing differently than usual when the 'flu' hit?

[Liberal Veteran]

108. Let's not do this.

I was exposed to HIV in the first couple of months of 1986. I know that for a fact.

I was not in the gulf war.

I was not exposed to any strange chemicals.

I was working in an office building when I got the flu in 1999 with about 400 other people (call center) and no one else experienced any odd symptoms. The flu I had was just the flu (fever and congestion that progressed to pneumonia just as it does in many older people).

I know that some people don't believe the syndrome known as AIDS and I throroughly examined their ideas and reject them.

I have also been down the road of having my illness and history cross-examined in depth by people who do not believe that HIV is the cause of AIDS.

Been there, done that. Didn't buy the shirt.

Let's not go there.

[Dear Maggie]

110. OK

Maybe it was the flu

But for many people it is not

With the millions of dollars spent to find the cause of 'gulf war syndrome' and they haven't yet; but are aiming in the direction of a neurotoxin.

I say, this is a chemical in paint and so many other things that it is unbelievable.

If you don't have a fatigue and grouchiness that started at about that very time, I agree with you.

Dismiss this idea

But others should look into it.

Thanks for your reply & for sharing on a very painful topic

[Shananigans]

197. Have some tact!

If you would like to discuss your topic, feel free. But insinuating someone might not have AIDS is just insulting and flabergasting!

[madison2000]

120. My dog had a cancerous tumor treated with canine interleukin-2

at the University of Wisconsin vet school 5 years ago and he is still cancer free. His tumor was injected once a week for 12 weeks. He only got sick after the first treatment.

Wow Liberal Veteran, I really did not know how or if IL-2 was being used to treat human cancers or other diseases. My dog was actually in a study sponsored by a pharmaceutical company so I did not have to pay for treatment except his films, visits, biopsies. I thought it was pretty cool that there was a cancer treatment which enhanced the immune system, as opposed to the ones which break it down. I brought him back for follow up biopsies for 2.5 years and they could never find any cancer cells. He is 12 now and has arthritis. I love telling people that he is a cancer survivor who had an experimental treatment that worked.

Good for you for fighting so hard to manage this disease.

[yardwork]

147. Liberal Veteran, congratulations on your great attitude!

I hope that you continue to do well.

[mr_hat]

2. I had Kraakenhausen-Melrdix. It never really goes away.

[AngryAmish]

10. What is that?

[FizzFuzz]

21. I googled on it but can't find any info. n/t

[Dear Maggie]

152. Could you describe this?

I couldn't find it either

Is that the right spelling?

[SmileyBoy]

3. Not me, but my father had Bells Palsy for over two years.

It took his face years to heal.

And I had a planters-style foot infection on my left foot when I was in the 6th grade, and I had to have part of my foot surgically removed.

[loudestchick]

39. My best friend from high school has had bell's for going on 15 yrs.

[Maine-ah]

50. Bell's

I had it in high school, it lasted only about a month though, thank god! I still have some very mild things, like my right eye is a little lower than my left, but it's not that noticeable, and I don't have as much feeling on my right side of my face as I do on the left.

[charlyvi]

4. I had a spinal fluid leak.

This is gross, but the fluid surrounding my brain was dripping out of my nose. My spine kept having to make more--honest. I had to have surgery to plug the leak--the surgeon sawed off a part of the bone in my nose to plug it. So far, so good.

[Obviousman]

79. Wow

I've never heard of anything like that before
William Donohue

[AngryAmish]

86. My buddy got one of those

MRI of the lower back w/ contrast. Tech got too happy with the contrast needle. He was (in the words of MNF preview on ESPN) JACKED UP! But got a blood pack and was better twenty minutes later.

[Cuban_Liberal]

6. I had a mastoid ear infection when I was 11.

The doctor had never seen one, since they basically disappeared in this country with the advent of antibiotics.

:)

[givemebackmycountry]

8. Define "Interesting".... n/t

[carolinayellowdog]

9. Is excruciating abdominal pain interesting?

I had two nasty bouts with intestinal obstruction, the last resulting in surgery. Wouldn't wish it on my worst enemy.

CYD

[AngryAmish]

11. yes

[miss_kitty]

43. That is TOTALLY the worst

I know that pain. I can't believe I lived through it.

[RadicalMom]

143. Gee, I had half my colon removed about five years,...

And it, too was nothing to even wish on *.

[supernova]

13. I've had Endocarditiis

It's a bacterial (usually strep) infection that lands in your heart instead of your throat.

6 weeks of IV antibiotics.

[mongo]

14. Well I tick like a clock

Due to the artificial aortic valve in my heart which was replaced 12 years ago - but it was a birth defect, not due to a disease.

I tune it out now but when I first started driving after the open heart surgery, I kept thinking my turn signal was on!

It is not a pacemaker, just a metal valve operated by my heart muscle. It came with a lifetime gaurantee....

[supernova]

16. Oh, I might have to get one of those

I haven't had to have my aortic valve replaced yet, but someday. Is it really THAT loud?

[mongo]

32. It is not really that loud

But I can hear it through the veins in my neck. My daughter can hear it if we are in a quite room, my wife can hear it when we are in bed at night, but most of the time people have to put their head to my chest to hear it (I do stupid human tricks)

The only really bad thing is being on coumadin (blood thiners) for the rest of my life. That first summer I slept under a comforter in July. I always wear a thrmal undershirt, t-shirt and long sleeved shirt in the winter. And even minor surgery is now a bitch. I need to have some teeth pulled, and they have to do it in the hospital instead of the Dr.s office. I get bruises that I don't know where they came from, and my butt gets a big bruise if I have sex with my wife on top.

Man I feel for ya, open heart surgery is a royal bitch. Make sure you set up some form of non-verbal communication with your SO, as you will be on a ventilator for at least a day, and the nurses would not let me have pen and paper. You also will not be able to sleep on your stomach for several months.

[Dear Maggie]

161. Were both your parents healthy?

The reason I ask, is that one lady who was seriously harmed by 2-butoxyethanol had a daughter a few years after that ... who had serious heart defects. The child had 2 surgeries already and by the time she was 12 would need another but more serious heart surgery.

The mom described some of this to me, which I restated here www.valdezlink.com/eyes.htm#robin Actually since I have heard nothing from the mom in a year now, I suspect she may not be doing well.

She was treated at Mayo Clinic. She said they did not know what was going on with her. (in her case, most probably 2-butoxyethanol poisoning from 1989 baby seal rescue work she did)

[proud2BlibKansan]

15. Not a disease

but as a kid, I spent the night at a friend's house and came home infested with flea bites. I seems funny now but it was miserable. I couldn't go to school for over a week. My family still laughs about the time I had fleas.

[FizzFuzz]

25. sorry, but this made me laugh....

:crazy:

[proud2BlibKansan]

33. That's okay

my family has been teasing me about it for over 30 years. One of them even gave me a flea collar for Christmas the year they came out.

[La Lioness Priyanka]

18. malaria, typhoid and other interesting tropical diseases!

[AngryAmish]

22. I know a gal who got malaria

In Africa during her Peace Corps days. Gets a bout every few years. Not too many folks in Chicago have malaria, but because it is a big city there are a few tropical infectous disease docs around here.

[FizzFuzz]

23. wow! Where did you grow up? I'm assuming you didn't get those

diseases somewhere in the US of A suburbs.

[La Lioness Priyanka]

24. india

[FizzFuzz]

26. I figured it probably wasn't suburbs of Detroit! LOL

Wow. Although I must say, I've always wanted to go to India. Don't think I could handle getting some serious bug, though.

Phew that must have been something.

[La Lioness Priyanka]

27. well this was over 20 years

and i was a particularly disobedient child

[FizzFuzz]

30. Yikes! Holy crap, they punish bad kids by dosing them

with malaria, dysentery, and all those other fun tropical diseases?? GEEE, I guess that's worse than "Now lioness, you behave because when you don't it makes mommy mad. Do you know what mad means? Let's talk about how we feel when we're mad". !!

[FizzFuzz]

19. I developed Ulcerative Colitis at the age of 7.

Imagine excruciating abdominal pain and uncontrollable blood/shit hemorrahges 15-30 times a day. Add occasional attacks by strangers, adults, teenagers or children when you are out in public and can't quite make it to the bathroom in time. That's what it was like in later years, until emergency surgery at 19. Nearly died. Had zero intestinal lining left. Woke up wearing a bag of shit, which no-one had taken the trouble to tell me about. I was told you have a small hole that you wear a band-aid over. Couple years later I had it converted to an internal procedure that is more like what the Dr originally described.

Thankfully, aside from occasional intestinal blockages, its been good for the last 25 or so years.

[Dear Maggie]

109. Do have Serious Fatigue, too?

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=105&topic_id=2277046&mesg_id=2281219&page=

[FizzFuzz]

133. thanks so much for completely ignoring my story

so you could grind your own axe. I just love non-sequiteur reactions when I reveal personal and painful stuff.

My anemia was due to severe blood loss. I was shitting large amounts of blood 25 times a day. I was not in the gulf war (this was some 30 years ago) and I was never near any oil spills, as would have been clear if you were paying attention.

[Dear Maggie]

148. You need more information

I am on topic

The way I learned about the poisoning of ethylene glycol monobutyl ether is irrelevant

It has been out there harming people since the 1930's and going mostly unrecognized all this time.

The internal skin can be ulcerated, etc PRIMARILY because of this chemical exposure

But you wouldn't suspect it UNLESS you also had serious, debilitating and lasting fatigue, that doctors do not know the cause of. In civilian terms, I am talking about CFS, and Chronic Fatigue Immune Dysfunction Syndrome. (So also CNS damage, trouble concentrating; depression could be part of it, too; headaches, etc)

I believe that our nation has a pandemic, unrecognized health crisis on their hands. And this has been the case for over half a century.

If my theory is right; doctors can find the fatigue: autoimmune hemolytic anemia. I learned about that from a woman now 39 who has it, most likely as does her 'gulf war vet' husband AND when she was 10 years old, in 1975 her mother died of it. She kept her mom's medical records from that time, and shared them with me, point by point.

I sure wish there were some doctors out there interested in this. I haven't found many yet.

Do you clean? Do you paint? or do mechanics? or hobbies? Are you around others who do? There are so many ways to get exposed to too much of this it is frightening.

[FizzFuzz]

149. you are not on topic. Massive blood loss. No chemical exposure

especially not at that time.

I do not have chronic fatigue syndrome.

My depression problems are Post Traumatic Stress Disorder related, and are greatly improved now.

Did I mention massive blood loss? This is a mechanical cause of anemia, not a chemical, hemolytic cause. OK? Pretty basic. Overlooking the obvious like this weakens your argument considerably.

You will have more success sharing your ideas with the medical community when you lose the fanaticism and listen to what people are saying. Trying to tie your hunches to any and all mentions of anemia no matter how the facts conflict with your proposition and overlooking basic medical awareness only makes you look like a nutcase. This will not serve you well in your quest.

[Dear Maggie]

156. Post Traumatic Stress Disorder?

Were you in the military? That is a term they used a lot with the gulf war syndrome vets ... Now Dr. Robert Haley has proved that it is damage to the brain &/or central nervous system and the govt has allocated another 14 million for researching a neurotoxin as a cause of their harm.

Well, guess what? 2-butoxyethanol and diethylene glycol monobutyl ether are both on the list of solvents & pesticides (they are both) that troops were exposed to. Note first 2 links on this link www.valdezlink.com/same.htm

What I am talking about is the fatigue that doctors don't find. www.valdezlink.com/cfid_share.htm And it is no wonder. It doesn't show up as they expect it should and they are not expecting autoimmune hemolytic anemia to be there. So they do not check for it. That's why they don't know the cause of the fatigue.

My theory is provable. But that will be up to someone else to do so. I'm only an ordinary citizen contributing to a humanitarian cause.

More helps for doctors:
www.valdezlink.com/why_fatigue.htm
www.valdezlink.com/gwv_why_fatigue.htm

AND the Best Research I Found
www.valdezlink.com/2-bmsds03.htm

& there is extra info that doctors can pull up for free ...
with more explanation ... that I don't have access to

[FizzFuzz]

162. I feel like you're spamming me---this is my last reply to you

PTSD is caused by traumatic pain and suffering and I made clear my experience was over a long period. (my entire childhood. Also severly abusive mother) It is not only related to military duty.

I'm a woman. I said surgery was about 25 or 30 years ago. The military did not accept women for active duty back then.

The military does not accept 7 year olds.

The military does not accept 18 year olds bleeding profusely out the ass.

The military does not accept 19 year olds who have to shit into a plastic bag glued to their stomach.

GOT IT?

You are a fanatic, and I think you have gone off the deep end.

[Dear Maggie]

164. All I can say is

the harm of 2-butoxyethanol has been around a long time; and can even contribute to 'abusive' adult behavior - Or cause it; It causes Central Nervous System damage including depresssion, & angry outburst-type behaviours. Sad story.

Of course I'm devoted to this topic and have put a lot of time into it ... or, I would not recognize the pattern of this chemical's harm.

Sorry to be any bother

Babies can be harmed by this chemical, too. Because adults exposed to it can breath it into the eyes of a baby; then the baby gets 'flu like' nausea and vomiting and diarhea ... I've recently wondered if SIDS is the body shutting down, and then, of course, the baby stops breathing.

But in most cases, baby would have some health damage, at the very least ... and, well, it's a long list which I won't go into here; seeing you are not interested.

Some input that caused me to give this some thought:

I've heard of this before http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=88#134

Same thing as SIDS? ... just an older child?
http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=88#276

Is this child - being exposed to n-butyl ether?
http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=222&topic_id=88#277

[yardwork]

140. I'm so sorry for what you had to go through as a child!

My younger son had problems with blockages and leaking when he was about five to seven - nothing like the problems you experienced. Even so he was very embarrassed and hated talking about it.

He only shared his secret with one person, a classmate with juvenile rheumatoid arthritis.

It makes my heart ache to think of children with serious illnesses, especially ones that cause embarrassment and pain in public. I'm glad that you finally had it resolved and that it doesn't cause too much trouble now.

[FizzFuzz]

154. thanks yardwork, I really appreciate your understanding reply.

It means something to me, I want you to know that.

Bowel disease really really sucks, and if you ever had a doubt about how cruel people can be, it will learn ya real fast.

It's fine for me now, thanks. I think it's given me some amount of compassion. Not perfect, of course, lot of anger and self-doubt that never really goes away though with work, you get more mature, more aware and more able to decide how to express the anger. But we all need to have something to work on, eh? ;)

What caused your son's problem, if you don't mind my asking? How did it stop? Thank goodness it did stop, and I am so glad he found a friend to talk to; that is probably the thing he needed most. That kid with Rheumatoid Arthritis probably needed a friend like your son, too. A lesson for both in support and compassion, I think.

I feel like I know how he felt, having a secret like that, knowing how people will react if they find out. Especially kids--kids can be very cruel. The self-hate that comes with bowel disease is so deep. It's very isolating. I mean, come on, every little kid knows the worst thing you can be called is doody-head. So to have your life reduced to shit is majorly shitty. How is he doing now? I think he is fortunate to have you there to help him through it. Even though it was a relatively short time that he was afflicted, the psychological effects can linger.

Warm and Happy Holidays to you and your family. :hug:

[SCRUBDASHRUB]

160. Fizz Fuzz, I also have Ulcerative Colitis (diagnosed at age 19 in 1990

while at sophomore in college). Lost a lot of weight. I'm 5'7 1/2" and got down to 109 lbs. I was anemic. During that semester, I had mono and strep throat (due to my low resistance, I guess). Thank G-d for sulfasalazine! I've been on that drug since then and have to go for colonoscopies now every other year. Insofar as the symptoms (going to the bathroom 18-20 times a day, constipation, cramping, etc.), I know what you went through.

Let's hope this is the worst disease we should ever develop.

I'm so glad you're OK. :)

[FizzFuzz]

163. Hey, compadre!

I hope you stay well!!!!!!!

Thanks, I'm glad to be well now too. :D

Let's stay well, yeah!!!!! :hug:

OK time to cut my computer addiction and help Mr Fuzz in the kitchen.

Enjoy your Holiday!

[MnFats]

20. I once came back from Jamaica with compylobacter

Maybe misspelled.
worst 'gastrointestinal disturbance' ever.
Gawd I felt like shit.
and: for half an hour I'd feel like I was absolutely freezing -- could not get enough blankets on me....the next half hour I'd be absolutely boiling.
I was the only one of our group that had the hollandaise sauce....that must've been it. eased up after about four days and gone after a week. The first round of antibiotics did nothing. After I submitted a sample of my shit they figured out what it was. I was so so lucky to have my soon-to-be-wife as caregiver.

by the way:
All props to Lib Vet!
Keep on truckin'!

[Paranoid_Portlander]

28. Radiation-induced sarcoma.

Not me, but my mother had it 25 years after being exposed to too much radioactivity from breast-cancer treatment. 50% chance of survival, and she made it, survived both forms of cancer.

[derbstyron]

34. Manchausen Byproxy

There's a fun way to grow up!

[loudestchick]

36. I'm so sorry! Parents are a trip!

[derbstyron]

40. Thanks

The problem is, of course, the after effects and what its caused:

anxiety issues

depression/bi-polar disorder

self-cutting and, of course,

anorexia (try getting treatment for *that* when you are a male)

:shrug:

[FizzFuzz]

65. Not.

How are you doing now?

I grew up with an insane mother and a real life threatening chronic illness, and I always wonder how growing up under constant crisis conditions affects people.

It affected me, I can tell you that. (I'm pretty good now, but it took many years and alot of work---and meds. ;) )

[derbstyron]

77. Yeah. I'm still struggling.

Among the problems I now deal with:

Anxiety
Bi Polar Disorder
Borderline Personality Disorder
Anorexia (fun when you are a guy)
and
Self-cutting

Oh, and I had blocked a lot of it out. With therapy - and a drug cocktail of 7 meds! - I'm getting memories back from when I was a teen

Sexual Abuse. With - my mother!
Lovely woman, huh?

[FizzFuzz]

135. hugs to you

:hug:

At my mother's funeral, one speaker described her as an angel on earth. I didn't bother to correct his perception, it really would have helped no one. The actions of sick, twisted people. More than I can understand that's for sure. Amazing that we have been able to not to go down that road.

I often wonder about other people who have had particularly traumatic childhoods and their adult lives. I know there are some "miracle" stories of people overcoming amazing hardship to become brilliant authors, surgeons, business geniuses, whatever, but I'm not in that category. I dunno, sometimes I beat myself up for that, but I have met other people who really don't find a way out at all. Me, I just achieved average human-hood, I guess. I wonder how other people get on in their lives.

I spent many many years being a real basket case and many many years working hard to become a functioning human being. It's not easy. Keep fighting, only giving up is failure.

I often beat myself up for not having achieved more in my life, or not being good enough, or still having old negative patterns, but it's good to remember, any step forward is a success. Baby steps are fine. (I know that's a line from a comedy, but I think it's very truthful anyway)

[derbstyron]

173. Funny you should mention that

I am a writer and will be graduating from Eckerd College, with a Creative Writing degree, im May. I am currently looking into graduate schools.

I understand your struggles. It seems like everyone thought I should be able to just, "Get Over It." I have been dealing with this shit for 15 years.

I turned 35 a few days ago and don't really expect life to get easier any time soon, if ever. Every day is a painful, anguished struggle that I have to survive.

We'll get through it. We have too!
Baby Steps - a great movie!
:headbang:

Best,
Darby T.
:pals:

[FizzFuzz]

180. Looking forward to May!!

:hi:Congratulations on your upcoming degree! What genre of writing do you tend to prefer?

"Getting over it"----I'm mostly pretty good, except for lingering habits of isolation and inertia. Escapism through computer addiction. ( :eyes: wry laughter). Those are rough to change, I must admit. But I've gotten through alot and made alot of progress, and obviously you have too, or you wouldn't be almost done with a degree. Part of the challenge of a soul murdering upbringing like we had is to learn how to feel our own feelings; become aware of who we are as individuals in our own right, so that we can have that internal compass that got ripped apart by the trauma.

Sometimes I think a success support group would be helpful. It's hard to break negative habits. Role models and a kick in the butt or a hand to hold would be nice. It takes some extra strong injections of life force to keep chipping away at those ol' immovable rocks, it seems. Impatience and giving up always louses me up too--I always want things to happen in a big splash and have instant gratification; that or I just give up. Continuous effort and slow improvement is hard. But then, overcoming destructive patterns is realy something to be proud of.

OK, welllll, blah blah dee blah, I'm rambling. ;)

Catch you later, Darby
FizzFuzz :pals:

[msanthrope]

191. Fizz Fuzz--remember, Lucifer is an angel, too....n/t

Survival is victory.

[yardwork]

141. One of my son's female classmates has a lot of these symptoms

I'm very worried about her. She's thirteen. She's a self-cutter, appears to be extremely anorexic, and seems to be developing traits of borderline personality disorder (my sister has it so I recognize the traits). She has terrible anxiety and depression.

Something is clearly not right in her home, although her parents appear to be fine. Something's wrong. I've wondered about sexual abuse.

Do you have any suggestions for ways that I can help this girl?

[Dear Maggie]

166. How to help someone else?

That's a very good question

Sounds like professional counseling might be part of what is necessary. Is there any possibility the parents are also equally concerned?

Have they checked out the physical things that could contribute?

I have info I would be glad to e-mail you to hand to the parents or fax to any doctor interested:

Depresssion, headache, fatigue & many other ailments could have a root cause of 2-butoxyethanol poisoning that is more common than people realize. www.valdezlink.com/psa.htm www.valdezlink.com/acute.htm

[derbstyron]

171. If you can, try and get her alone and talk to her

You have to be careful, especially with anorexia.

NOTE: Do NOT mention anorexia - or talk to her about her appearance.
This the WORST thing that you can do. Talk to her in terms of her health. Such as, "I was worried about your health."

Maybe, you can talk about this with her parents. After ruling out physical causes (above post) you can ask them, "I notice that ? is getting awfully thin. Is everything ok?"

If they show no interest or close up try to get her to open up and get her into counseling, secretly and away from her parents. Is there any chance that you could take her? Point out that the counselor will not tell her parents anything (unless there are clear signs of sexual abuse occurring). It may be difficult because of having to pay but certainly there is a community center that will charge little, or nothing. And you sound like you are interested and willing to research.

Make sure she realizes that she's not alone and mental issues are as ok to have as physical ones. So important if she's going through mental issues. You may also go over these issues with your son and have him approach her. She may feel more comfortable with support from a peer.

I salute your interest. Please let me know if I can offer support, or (guidance) to her, or you, in any way.

Best,
Darby T.

:pals:

[yardwork]

188. Thank you, everyone, for your concern and kind responses

My son's classmate is getting counseling and therapy. Her parents are supportive of the therapy - they arranged for it and pay for it. So it sounds like that side is take care of.

I know the mother slightly and she does confide in me somewhat. I think I will give them a call this week and ask about their daughter's health.

Thank you for the info on how to approach people with anorexia. No comments about weight or thin or eating, got it!

Thank you again. DU is a wonderful group.

[FizzFuzz]

179. I don't know; certainly darby just offered alot of very good ideas.

I just know that as a kid my parents were respected in the community, my mother was a well known and beloved teacher in the puclic school system. So, though the parents seem fine, that guarantees nothing. No one would believe me the rare few times I tried to get help. Mostly I closed up, but wished someone would figure out something was wrong and take me away. I don't know what the magic words would have been if someone was motivated to get involved and talk to me. Maybe something like, "I can see you've been hurting for awhile." and then offer to listen to anything she wants to say? I don't know, it's a thought.

Anyway, I realize this is not helpful in terms of your real life situation. My first thought was see if the school counselor will help, but frankly, I don't trust any agency that answers to "the authorities" or the beaurocracy, to be of any help. In fact, I trust those kinds of agencies to cause harm. But I'm cynical; guess I read too many awful case studies.

I wish I had some helpful suggestions.

[hyphenate]

194. Oh hell

How old were you? And how did it get stopped? Usually, they end up merely charging a parent with child abuse, but sometimes they have to commit the parent.

It's definitely not something I would EVER wish on anyone--glad you survived.

[loudestchick]

35. chorea...that's what neurologists call

any seizure type disorder they don't have an official name for...basically I was "allergic" to the high levels of hormones produced by my body during adolescence...had mild versions while I was pregnant w/ all three of my kids.

Lib Vet, I have several friends w/ Hiv...luckily none have gone full blown...I'll keep a positive thought for you...as I do for them!!!

[Cyrano de Birdiac]

37. Does Malpractice Count?

New here; first post. Going to ease in gradually.

Does routine surgery where the surgeon nicks the spleen and about twelve hours later your BP goes to about 40 over nothing count?

He had the arrogance to tell me "if I'd spotted it earlier we could have saved it".

Checked with two lawyers who said it was malpractice but they thought it would only bring in about $1M so it wasn't worth their while.

That would have been about $700K tax free to me.

Cyrano de Birdiac

[Nicole]

45. Welcome to DU!

:)

[AngryAmish]

94. Please PM me

If you lost your spleen than the case is worth pursuing. I'll hook you up.

[Cyrano de Birdiac]

136. PM to AngryAmish

Sorry can't PM without more posts; anyway civil actions cannot be pursued more than two years after the event so this is moot.

[American Tragedy]

38. Crohn's disease. I'm in remission now, but it never really goes away

It's pretty disgusting, which is why I've never discussed it with anybody in person outside of the internet. I was anemic, experienced intestinal hemorrhaging that would turn the toilet bowl dark red with blood, and severe abdominal pain, like I had eaten razorblades.

I haven't had any particularly exotic diseases yet.

[FizzFuzz]

66. I grew up with Ulcerative Colitis, AT. My heart breaks for you.

You described the joy of Bowel Disease very well. Great for making friends and influencing people, too, eh?

I'm glad to know you're in remission. I'll keep you in my thoughts.

Do you know about a website, IBDSucks.com? I went there for a while; you might want to check it out.

[sir_captain]

115. Crohn's and IBD are entirely different

propositions. Crohn's is really a much bigger deal.

[FizzFuzz]

130. I know. Crohn's can hit ANY part of the digestive system

UC is limited to large intestine. IBD, Inflammatory Bowel Disease, is the umbrella term and encompasses UC and Crohn's. Either disease can also vary from individual to individual, ranging from fairly mild manifestations to seriously disabling/life threatening disease. My experience fit the latter description, so I hope you're not trying to trivialize my previous posts, because that would really hurt my feelings.

My experience was hellish. I was trying to offer some empathy from someone who has been through some degree of a similar hell. Knowing what I know about the disease and the catastrophic effect it has on quality of life, I have strong feelings when I meet other people with it.

I think I understand what you're saying; I always get very angry when people try to call what I went through IBS, Irritable Bowel Syndrome. IBS is painful, inconvenient and humiliating, but is not debilitating nor life threatening.

[Dear Maggie]

102. I've heard of this

From some who had exposure to 2-butoyethanol

What kind of anemia did you have, besides the actual loss of blood?

The anemia that is hiding out from the harm of ethylene glycol monobutyl ether ... is autoimmune hemolytic anemia

I expect it to underlie all the odd symptoms that you hear about from the 'gulf war syndrome' vets and I expect that it is part of what some of the Exxon Valdez oil spill cleanup workers have.

Could you help me understand more? That these groups & civilians, too, can unravel this mystery

It is an anemia that doesn't show up at first in the regular blood work ... so it has been the root cause of so much harm; but not blamed for it.

Other comments this thread http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=105&topic_id=2277046&mesg_id=2281152


Why did I study 2-butoxyethanol? www.seattlepress.com/features/forum/viewtopic.php?p=134...

[THUNDER HANDS]

121. I'm pretty much assured of getting that when I'm older

I have uncles on both sides of my family who have it and i had hemorrhaging also (have since I was 13).

I'm just waiting until I'm about 40 for it to kick in, then I get to lose about 100 pounds like my uncle did.

Woo boy.

[FizzFuzz]

158. Magic Rat, I don't know what to say,

but I want to let you know I'm thinking of you.

If you ever want to vent, I'm all ears. Well, eyes.

[Dear Maggie]

155. Is this similar to ulcerative colitis?

... just thought you would know

[miss_kitty]

41. Cancer. That was interesting-for a little while.

but it got old quick. I think I'm done now.

[FizzFuzz]

69. glad you're here now!

:hi:

[patdem]

42. Well, I have had a gall stone since I was 17 ..am now 55 and just last

January had it removed and it was the size of a golf ball. Really I still have it (in a container-not my body). Or ping pong ball, depending on your sport!. Anyway it was removed with liproscopy(sp?)...and the doc wanted to cut me open to remove it...but the technicians said...no..you can remove it now.

Well it was removed with probably a larger scar than most liproscopy(sp?) but I was NOT cut open.

The only thing besides that is that I had a seizure 2 days before because I was in so much pain for 2 weeks prior and took Aleve(the problem?) and aspirin as often as I could. But the seizure made me unable to think or move in the directions my mind wanted to. I tried to put my coat on and my arms would not move toward the jacket but away from it. When the paramedics got there I tried to walk down the steps, but my feet wanted to go up and not down, and my roommate said...put her on a stretcher, she can't walk down the steps. When I got to the hospital I began to shake uncontrollably and they asked why I was shaking and I could not answer...that is when I had a seizure. I believed for about 6 months that I had mad cow disease!!! And I was scared to death!!! I have never had a seizure before nor since, so I have to mark it up to the pain and medication and lack of sleep??

Anyway, that's my story and I'm sticking to it!

[CO Liberal]

44. Bell's Palsy

One side of my face was partially parylized for a few months in 1987.

[NorthernSpy]

46. I have Viking Disease

It's just in the initial stage. I'm hoping it doesn't progress. Although supposedly, if it develops in your twenties it tends to be aggressive.

[FizzFuzz]

59. what is Viking Disease? n/t

[NorthernSpy]

95. Viking disease is a disorder of the connective tissue of the hands...

It begins with the appearance of a hard little lump of collagen on the palm, usually right below the spot where your pinky or ring finger joins your hand.

If the disease progresses, the rogue collagen begins to form a sheath around the sinews that control the fingers, and eventually grows out into the fingers themselves.

The end result is Dupuytren's Contracture: the affected fingers are pulled palm-ward by the growing bands of collagen, and finally the hands themselves are twisted shut into unusable claws. Sometimes, the collagen also forms nodules and lumps on the backs of the hands and the knuckles. In some people, these knuckle pads are the only presentation.

The disorder is the result of a dominant gene, and the course of the disease can vary from a single, inconspicuous lump that never causes any trouble, to the loss of the use of both hands within a fairly short period of time. The ultimate severity of a given case can be difficult to predict.

There is no cure at the moment. The only treatment currently involves peeling all layers of skin from affected areas of the hand, and grafting some of the patient's thigh skin in its place. But it is thought that some current genetic research might produce new, less difficult/disfiguring treatments.

Viking disease is named for the ethnic groups that those affected typically belong to.

So far I just have one little lump.

[FizzFuzz]

131. thanks for explaining. Very unusual.

I hope that lump stays small. Best of luck!

[Dear Maggie]

169. Connective tissue?

I looked it up, too; but your definition is more complete. If it deals with connective tissue, that is part of what the 'gulf war syndrome' vets have to deal with. Some get aching joints; teeth fall out (whether connective glue or bone marrow problem, I don't know) and serious forms of arthritis. I wonder whether or not they are related? The chemical exposure I suspect for them and many in the general population is 2-butoxyethanol. But it goes by lots of other names. www.valdezlink.com/same.htm

Dupuytren’s Contracture - AKA Viking's Disease:

There is currently no non-surgical cure for this disease. Surgery is unpredictable, and does not remove the pathology or the progress of the disease. In other words, it often comes back.

Usually affecting the hands and feet, fascial tissue grows out of control and wraps around the bones (metacarpals) to cause a claw-like contraction that can be painful and incapacitating.

[lonestarnot]

185. I have read about this, as Duputrens Contracture, hoping they can come

up with the genotype for genotherapy. Would that help you?

[flamingyouth]

47. I have Meniere's Disease

Not the most interesting. It is a neurological and inner-ear balance disorder that comes and goes. I've managed to keep it under control but occasionally I have bouts of dizziness and vertigo.

[Kathy in Cambridge]

56. My mother has that

she has a difficult time with heights, flying, on boats, etc.

[sir_captain]

116. I was diagnosed with that too

though I'm not sure I buy it--it is perhaps the most over diagnosed condition that there is, as dizziness/vertigo is almost impossible to figure out. Do you have tinnitus?

Also, what do you do to help with the vertigo? I take a lot of meclizine and try to keep really hydrated all the time, but sometimes everything starts spinning anyway.

[lonestarnot]

187. Chest a drawers disease....Chest fell in my drawers

[baba]

48. Miller-Fisher Syndrome

I had it as a kid. It is a variant of Guillaume-Barre (sp.?) and I believe it is a virus-caused neurological disorder.

[crispini]

49. I had Dengue Fever

when I was in the Peace Corps in Thailand. Flu-like, but it hurts like a M--F--. In Thai they call it 'break bone fever' because it hurts like your bones are breaking.

[FizzFuzz]

70. wow. That IS interesting.

Bet it wasn't while you had it though.

Glad you're here now!

[LoZoccolo]

51. I had a tactile form of a migraine headache.

Instead of having visual disturbances, like spots before my eyes, I felt numbness on one side of my body. I thought I was having a stroke and ended up in the hospital. Even neurologists didn't know what was wrong with me until they looked at the results of a blood test and found that some protien or something that increases when you have a migraine was there in unusual amounts.

[gollygee]

53. Oh I get that with my migraines

I think my doctor called them Type II Migraines?

Yeah that sucks. I also have other stroke symptoms - like slurred speach and sometimes part of my face will droop. Do you get that kind of stuff too? I had to stop taking birth control pills because of the headaches.

[LoZoccolo]

54. Oh wow, no, I didn't get any of that.

It was relatively mild numbness, actually; I just freaked out about it being on one side like a stroke. But I could do all that stuff they use to check if you're having a stroke - like push against the doctor's hands to see if one side is weaker than the other, close your eyes and see if you can tell what cheek he's rubbing, etcetera.

[gollygee]

57. I think if you have some stroke-like symptoms

you could have others. So it might happen yet.

Mine aren't as bad since I stopped taking the birth control pills, but I still get some of it - especially the numbness. Oh and the slurred speech.

[Red State Rebel]

124. My son does that very same thing!

His tongue will go numb and then the numbness will migrate down one arm.

[SarahB]

55. Hyperemesis gravidarum

Basically, it's chronic and continual nausea and vomiting in pregnancy (for the whole 9 months in my case I generally vomited several times a day). Fortunately, it only happened the first time. It was difficult enough having an unplanned pregnancy (especially given I was rather careful), going to college, and adjusting to married life at 19. This made it a bit rougher, but it was only temporary and she was still a big, healthy baby. Now she's a very bright, strong young lady. :)

[Ilsa]

73. I was close.

I was sick the first five months every day. It got a little better. Didn't have to be hospitalized. I swear I slept about 12-14 hours a day those first five months.

[JanMichael]

60. I thought that I had Ass Cancer....But it was only hemorrhoids...

Needless to say Steph thinks I'm an ass whenever I say that...

[samplegirl]

63. Well top this Gulliane Barre Syndrome

At age 20 i contracted a bizarre disease....usually a viral
infection ie. strep or flu virus.
Most people however got it from the Swine flu Innoculation.
I did not have the shot but my brother did an was dreadfully
sick for days with flu symptoms. A few days later i came
down with the flu and mine was nearly fatal. At age 20
i was completely paralyzed and on life support. The only thing
i could do was blink. Rehab. followed after 3 months of total
paralasis. Talk about a horable experience. I completely recovered
within a year and have never had any serious again.
I was never a sickly child........no measles mumps or chicken pox
skipped it all.

[rug]

67. Wilkes-Barre Syndrome

The asshole keeps popping up in October

[Deja Q]

72. Sounds a bit like Barry Williams syndrome...

Greg Brady got a case of that when he dated his sister Marcia... :wow:

[FizzFuzz]

74. Wow!

:wow: Must have been very scary.

Glad you made it!

[NorthernSpy]

96. gaaah!

I read about that disease in a magazine when I was a kid. For a long time afterward, I terrified that I would get it.

I'm sorry you had to go through that!

[Deja Q]

68. Mine is called 'reality'. I urge people NOT to get it.

n/t

[Beware the Beast Man]

71. I had a very rare form of scabies when I was 15.

Or it was something related to it, can't remember very well. A trip to the dermatologist cleared it up, though.

[WMliberal]

75. scarlet fever

That's about as exotic as I've gotten so far.

Why? Got anything for me?

[Dastard Stepchild]

76. I have Gilbert's Syndrome

since the inevitable "huh" will soon be popping into someone's mind, here ya go:

*********************************************************
Gilbert’s syndrome is a common, benign genetic liver disorder. It causes levels of bilirubin to rise above normal levels. Bilirubin is a yellow chemical by-product of hemoglobin (the red pigment in blood cells) and is usually excreted by the liver into bile.

Gilbert’s syndrome is found in 3-7% of the U.S. population, affecting up to 10% of some Caucasian populations. This condition usually manifests during the teen years or in adulthood years (ages 20-30).
*********************************************************

When I get stressed and really sick, my eyes turn yellow. Just like
Scut Farkus (a nice little esoteric holiday reference for ya all).

[AngryAmish]

88. Yellow eyes - Just like Ben Johnson

No, I'm sorry, he was jacked out of his mind on dianabol and his liver was dissolving.

[laruemtt]

78. anybody else have Lyme disease?

this little varmint spirochete can suck the energy right out of a person! but the worst part is it's made me really stupid, and i know it. will be 10 years with it next year, but i'm really lucky because other people i know with it are in wheelchairs and are in lots worse shape.

[Red State Rebel]

122. I have Lyme, it gave me Spinal Menningitis

Not fun. I have no other major symptoms of the Lymes that I'm aware of, it's just there.

The menningitis on the other hand caused such fun as hallucinations, 105 fever,in the hospital for almost a week - do NOT want to do that again.

[sleepyhead]

81. Polio.

I got it from the vaccination. I am old enough to have been one of the earlier recipients of the vaccine, before it was refined. I developed major weakness in my legs and kept falling down. My teachers (I was in pre-school at the time) insisted to my mother that I had some kind of developmental disorder and suggested institutionalization. The one good thing my mother ever did for me was to ignore that advice and seek an informed opinion. I spent the best part of a year at home (also contracted scarlet fever in the interim - lucky me!) and luckily ended up with only a mild residual clumsiness.

[yellowdogintexas]

83. not me, but my ex husband had histoplasmosis that went

systemic on him and made him really ill for several weeks. Symptomatically it presented much like a very acute lymphoma, swollen lymph nodes (HUGE), but he also had all the viral symptoms, aches, pains, chills, etc.

later in life he developed glaucoma and I think the histo may have been the root cause of that as well.


He tore down a small chicken coop that had been abandoned for years and stirred up a ton of chicken poop dust, which probably was the source of the infection.

[KissMeKate]

84. erythema multiforme

I broke out in welts all over my abdomen, my lips swelled up, and I was generally miserable.

I have no allergies-

it was very bizarre.

[name not needed]

85. I don't really have Chagas, I just pretend to on TV.

:P

[Name removed]

87. Deleted message

Message removed by moderator. Click here to review the message board rules.

[mitchtv]

89. hepatitis A, B,C, D : two liver transplants, but the really Odd one

was pastorella multicida. probably obtained from my wolf hybid while I was awaiting transplant. Last tansplant in '96

[Cobalt Violet]

119. There is about 0 awareness for Hep C.

Have you been through any drug TX for Hep C before your transplant? Is your newest liver in danger?

[mitchtv]

125. no and No

it was damaged by the B, and it is in danger from the same for which I inject HBIG(hep B immune globulin) weekly

[Mr. McD]

90. This has to be the disease for you

Now scientists call this disease
Bromidrosis
But us regular folks
Who might wear tennis shoes
Or an occasional python boot
Know this exquisite little inconvenience
By the name of:
STINK FOOT
:)

[MaryBear]

92. Once, I had

Parkinson's Disease.

[davis_islander]

97. SIgMD....

Selective Immunoglobulin M Deficiency. Very rare. Have to be very careful of infection. I have virtually no immunoglobulin M.

[Maestro]

98. Not too exotic but

I had Thyroid cancer. Went through radiation and then built up my thyroid hormone levels after radiation. You never know how much you miss something until it is gone. Sheesh! Not having the thyroid hormone wreaks havoc on the body.

More rare is a case of lichen simplex chronicus that I had. It was awful and one of the most maddening things I have ever gone through. It is a skin condition.

[Zuni]

100. I had viral meningitis

It was fucking awful. My head hurt unbelievably bad, like my head had been bashed with a baseball bat

[Red State Rebel]

123. Been there, done that.....

My headache wasn't as bad, I think thats why they misdiagnosed me. (At first they thought I had Hepatitis - but when I failed to turn yellow they figured they better do a spinal.) I was extremely light sensitive and sick as a dog. They discovered later it was from contracting Lyme Disease.

When I was starting to hallucinate I thought I heard my heart stop beating and I felt so bad the only thing I could think was "well pretty soon the rest of my systems will shut down and I won't feel bad anymore".

[Hillaryin08]

101. Hypersensitive to poison ivy.

I got a rash that within three hours turned from an ordinary poison ivy rash into a allover body rash that had golf ball size puss bags hanging from it. They tested me for the flesh eating bacteria. They even quarantined me. I was pregnant to boot. So they had to treat me extra carefully, so it took even longer to heal. I looked like I had severe burns all over my body. In the emergency room they treated me like I was critical. I was just oozy and irritated.

[AzDar]

103. Eresypelas!!! My head blew up like the Elephant Man's (Woman)...

Apparently, I almost died...(had the infection traveled to my brain).
What scared me the most was this Infectious Disease Specialist who kept "preparing" me for the fact that I would probably need plastic surgery(on my face!!) when I recovered. When the infection was beaten,
my face sloooooowly went completely back to normal. Soooo grateful.

[Eurobabe]

104. hashimoto's thyroiditis

thyroid flickers on and off at will before it eventually burns out. docs give you replacement thy-meds, gland decides to go back online again while you are on medication. you go hyper. end up in ER with racing heart.

it's such fun. NOT!

[sbj405]

111. Me too.

Spent the last year trying to get my does of synthroid right.

[gardenista]

138. I have it too.

I found a wonderful doctor, finally, after 6 years of struggling to get the dose of Synthroid right. Unfortunately, that wasted time cost me the opportunity to have a child. I wish I had been more assertive with my regular doctor, who was not willing to treat as aggressively as I needed.

I am finally on a sufficient dose of synthroid with just a tiny bit of Cytomel (T4). I feel almost normal again and the thyroid antibodies are starting to finally drop. They have been responsible, in part, for the fertility struggles we've had.

If you need the name of a wonderful doctor, PM me.

[Dear Maggie]

165. Thyroid & racing heart?

These are some of the odd 'add on' symptoms of the harm of 2-butoxyethanol

Check hemolytic anemia for the racing heartbeat, plus at least a couple of other things on this list:

Chills
Fatigue
Pale color
Shortness of breath
Rapid heart rate * *
Yellow skin color (jaundice)
Dark urine (indicative of blood in urine - never dismiss this! Stop exposure immediately!)
Enlarged spleen

www.valdezlink.com/generic.htm#8

But don't expect the medical profession to recognize it as a symptom of this chemical's harm - nor those affected by it, either

Right now, that's not the way it is

[juslikagrzly]

105. Sudden Sensorineural Healing Loss

with extreme vertigo last August. Left me profoundly deaf in one ear with severe imbalance and some cognitive impairment (mild thank god). Now have crossover hearing aids and have to go to vestibular rehab. Can't drive, look drunk when I walk, lots of fun. No known cause at this time although some suspicion its auto-immune related.

But, lots of support and love, a sense of humor ( and DU of course) have kept me semi-sane

[skygazer]

106. Well, I've got a screaming migraine right now

But that's not really a disease and it's not so much interesting as nauseatingly painful.

Had cervical cancer in '97 - luckily one of the easier cancers to beat.

More lovely bowel stories - IBS (irritable bowel syndrome) characterized by chronic constipation. Sorry, but there it is - more common too than you would think. Once you find the right combo of foods, pills and fiber supplements, it's livable.

And I did have pneumonia at least ten times between 1990 and 1996 - twice a year, spring and fall, starting in the fall of '90. One year had it three times. Lost track of the exact number of times I had it - I just got to the point where I'd call the doc and say, "it's that time again" and they'd call in a scrip. Knock on wood, since I moved from VT to CA 6 years ago, I haven't had it once.

[Nadienne]

107. I once thought I was growing a tail.

My tailbone hurt like you wouldn't believe! I couldn't sit, I couldn't stand, I couldn't lay down...

I went to the doctor and found out it was a pilonidal cyst, and it was infected. They had to do surgery, but first they had to cure the infection. My boyfriend had to stick strips of gause into my infected, hollowed-out cyst, twice a day. It smelled very, very bad at first.

And I swear, my ass was looked at by twenty people by the time I was done with the whole ordeal.

[Willy Wonka]

198. Cool! You and Rush have something in common!

:evilgrin:

[Midlodemocrat]

112. I have a permanent case of pinbuttitis

....at least that is what my husband says.

[Mabeline]

113. I have (CMT) Charcot-Marie-Tooth a form of Muscular Dystrophy

this is hereditary, my mom has it, my oldest brother has it, mom's mom had it as well as mom's youngest brother, among others.

[auntAgonist]

114. ITP Immune (Idiopathic) Thrombocytopenia Purpura

First noticed it when menstrual cycle went haywire and bruises began to appear EVERYWHERE on my body. 32 bruises on my right leg, 27 on my left. Too many to count everywhere eles. Bone marrow tests concluded that platelets were being formed but destroyed elsewhere. Heavy doses of steroids only made me sicker. Long story short.. I was hospitalized and my spleen was surgically removed. I've been in 'remission' now for 27 years! I still have my platelets checked every six months just to be sure.


http://www.itppeople.com/aboutplate.htm

http://www.itppeople.com/splenectomy.htm

[Dear Maggie]

168. Bruising?

I heard that this was a sign of leukemia

I have heard of spleen removal and a lot of odd things happening for those who get too much exposure to ethylene glycol monobutyl ether

Robin had her spleen and pancreas removed;

Spleen helps discard the red blood cells, and more, I'm sure

It is good news that you are doing well so many years later.

Did you also have fatigue with this? (chills? rapid heart beat?)

Do you remember anything different that was going on when this started up; did flu-like symptoms happen, too?

[nytemare]

117. Chiari Malformation

It is sort of a birth defect, I suppose. Basically, my cerebellum is long and hangs out of the bottom of my skull, so it is not protected by my skull. It can cause motor skill and speech difficulties, and dizziness. The only symptom I get that may come from the condition is nystagmus in my eyes.

I would not know that I had the condition until I had an MRI done because I was getting frequent migraines. Weird stuff.

[Cobalt Violet]

118. Hyperkeratotic fissured hand and foot eczema

http://eczema.dermis.net/content/e03typesof/e08handfoot/index_eng.html

[yardwork]

145. That's what my husband and I have! Thank you for the link.

The soles of his feet look exactly like the photo, and about five years ago I developed a tiny patch of it under my toes, where fissures develop that itch and burn. Mine is a mild irritant but his feet are a mess.

I read the treatment suggestions. I already use natural emollients on my feet and hands. I'll suggest he try them on his feet.

Any other suggestions? Thanks again.

[patdem]

127. We are a SICK bunch of folks, we are. AngryAmish, bet you NEVER

thought this post would get over 100 replies! :shrug:

[barackmyworld]

128. Coxsackie Virus, the funniest sounding virus ever

it is pronounced how you think it is. In kids, it gives them sores all over the hands, feet and mouth. In older people (I had it at 19) it is just horribly painful mouth sores and swelling. A GREAT disease to have during FINALS!

[fudge stripe cookays]

129. I've been remarkably lucky, compared to some of this stuff!

I'm glad you're all still around and kicking!

I have joints from hell. Most notably, "grasshopper patella."
(http://www.sma.org/smj2004/8/07The%20Patellofemoral%20Joint.pdf) Do a search in the .pdf for "grasshopper." They even show pictures.

I started experiencing a lot of pain in high school PE since all our coaches ever did was make us run a mile. I could never run it-- always had to walk it, and it hurt. I could never get my coaches to understand why it hurt so much. They just thought I was lazy.

Finally my mother took me to an orthopedist when I was 16.

He began to twist me in different ways and watched me move like Gumby into impossible positions; especially my legs. Then, he uttered the immortal words, "Wow! I've read about this in the medical books, but I've never actually seen one!!" :eyes:

Needless to say my mom panicked, wanting to know if he could do surgery, if I was a freak, how could we fix it?

It's just a genetic malformation of my knees, and unfixable. I have a helluva time running, jumping, skiing, playing tennis, doing aerobics, racquetball, or basically any tough sport. It's swimming and walking for me.

Since then I've also discovered that I have completely flat feet, which has caused arthritis and a bone spur on top of my big toe. Between my knees and my feet, heels are a thing of the past.

FSC

[Modem Butterfly]

134. Geez, all I have is lupus

I thought that was pretty bad. Some of you folks really have stuff to complain about.

Here's wishing everyone a happy and healthy 2005!

[Lone_Star_Dem]

176. I know what you mean

My lupus seems like small potatoes now. :)

[TexasLady]

137. My son had Erythema Multiforme

big target bruises all over his body when he was one. He got it from a reaction to sulfa. It sucked because the doc said that we had to watch him because it could get into his mucus membranes and kill him. Horrible stuff. Hes fine now!:D

[yardwork]

146. I had several bad reactions to sulfa drugs

The last time I developed an all-over body rash that made me look like an alien. They told me not to take sulfa drugs again or I'd end up in the ER or dead.

[LDS Jock]

139. severe ice cream headaches

when consuming large quantities of the good stuff. put ice cream in front of me and I just can't stop myself

[PartyPooper]

142. As a hypochrondiac, I didn't need to read this thread!

:scared:

[bicentennial_baby]

144. Same here!

Although I prefer "Health Anxiety Sufferer" myself, :P

[NNadir]

150. My son was sometimes described as having "Sturge-Weber" syndrome.

However, by sheer luck, he never developed the actual severe symptoms of that condition: Severe intractable epilipsy (with almost constant convulsions), mental retardation or glaucoma. All he has is a large birthmark on his face. Whether this (now minor) problem actually constitutes "Sturge Weber" syndrome is subject to debate.

He's developing into a fine young man, of whom we are very proud. He will always have a high risk of glaucoma however, and will need to see an opthamologist regularly through his life. We haven't seen a sign of it up to the age of ten.

[Fed Up]

151. When I was a teenager I thought I was allergic to beer.

My friends laughed at that.

[Dear Maggie]

153. Alexandra Scott diagnosed with neuroblastoma at age one

June 11, 2004: Alexandra Scott diagnosed with neuroblastoma at about age one, alex scott is now eight years old, still battling her cancer and on a mission to raise $1 million to fight the disease. she's doing it with a lemonade stand.

You can tell by the news comments in an interview mid Nov with Alexandra's mother, Liz Scott, that the little 8 year old girl had died. But she raised money with her lemonade stand ... for pediatric cancer research ... & it is ongoing.

What is neuroblastoma? Neuroblastoma is one of the most common solid tumours of early childhood usually found in babies or young children. The disease originates in the adrenal medulla or other sites of sympathetic nervous tissue. The most common site is the abdomen (near the adrenal gland) but can also be found in the chest, neck, pelvis, or other sites. Most patients have widespread disease at diagnosis. www.cancerindex.org/ccw/guide2n.htm

Adrenal and nervous system tumors? This is the kind of thing that a commonly used chemcical would cause. 2-butoxyethanol is a teratogen: it harms the developing fetus. It damages the Central Nervous System; it has tumors throughout the endocrine system: adrenal system could be affected. The World Health Organization reports that it causes tumors of the brain and leukemia in children of those overexposed to such chemicals.

Parents of these children should be checked for the harm of 2-butoxyethanol. Do they have chronic fatigue? check this www.valdezlink.com/acute.htm www.valdezlink.com/psa.htm

What is a teratogen? www.valdezlink.com/teratogens.htm

[Longgrain]

159. Congenital Anosmia here.

The limited ability to distinguish smells.

http://www.maxuk.net/nose.html

[Lizzie Borden]

167. lupus.

[Bouncy Ball]

170. Hmmm

I don't think IBS is interesting in the least, but I've been plagued with that since adolescence.

I've had meningitis.

I have unusually high blood cholesterol with NO indicating factors. I don't have high blood pressure (it's low in fact), I am not overweight by enough to indicate it, I exercise, I eat a low saturated fat, low cholesterol diet, I don't smoke and never have, no diabetes or anything else, etc.....

It seems to run in my family. Both my mother and her mother have it/had it. My grandmother had a heart attack at 42. She weighed 105 pounds and was in kick-ass shape. She eventually had to have all her heart valves replaced. She died of heart disease.

I am on meds for the rest of my life for it. Even when I was 18, weighed 130 (I am 5'7" and have a medium frame), had a resting pulse rate of 48, worked out all the damn time, and ate a great diet, I had a total blood cholesterol of almost 300. My body just seems to enjoy manufacturing a LOT of it. Triglycerides tend to be very very high, too.

It's weird. Last time I went, before going on the meds, my "bad" cholesterol (LDL?) was so high it couldn't be measured. That was when the doctor said "yep, you need to go on this" and I agreed. I'm in my mid-30s but if it means a longer life and a better quality of life, I'm willing to take it every single day.

[fudge stripe cookays]

175. Yikes!

I had no idea! You take care of yourself, dammit!

FSC

[Bouncy Ball]

178. LOL, I am!

When I was younger, I was, of course, immortal, so I never cared about my unusually high cholesterol, but I noticed as I got older it concerned me more. Hmmm. LOL!

It'll be checked again in three months and should be, thanks to the miracle of modern pharma, down to healthy levels.

Thanks for caring, sweetie! :hug:

[autorank]

172. DID: Dissociative Identitiy Disorder

Don't have it but it's real interesting!

[Tikki]

174. Four major surgeries between age 20 and 30...

I am sure glad my husband had good health insurance through his work...

Gallbladder, spleen, half of the females, then the other half of 'em.....

Each time they would have me sign the paper for permission to take out my appendix...each time they would tell me they could not find my appendix. Must be teeny weenie, hidden very well or nonexistent....

Tikki

[Dear Maggie]

177. testicular seminoma & also sterility - zero sperm

Three US Coast Guardsmen share - health effects from monitoring the Exxon Valdez oil spill cleanup: www.valdezlink.com/1989photos.htm

I was a Coast Guard beach monitor in the 1989-90 seasons. "I was a monitor for the 'bioremediation workers' of the Exxon Valdez Oil spill cleanup. We were there before the first worker arrived to spray the beaches with Inipol EAP 22 and we were there until after the last one left."

"What distresses me the most, although I have many ailments, including rapid heart beat, is that I have been unable to father children. There is no explanation for it."

For ten years I have been to doctors with sometimes debilitating symptoms, and I do in fact have a "Undiagnosable" Infertility problem (zero sperm count, testosterone replacement therapy).

I have never connected the two, But I have never had answers. I have never had an answer on any of my medical problems. I have gone to some of the best specialists and endocrinologists in California; spent thousands of dollars, and I am simply "unable to father children". But none of them can say why.

The Sterility is my greatest concern. With no visible or diagnosable cause, I am 100% Sterile. All the testicular functions are intact, even the proper trace chemicals and hormones are present (except for exceptionally low testosterone). The doctors just scratch their heads when the tests show a zero sperm count. They say it's unheard of. Low counts are in the millions. I am zero. Years and years of "i dunno's" from doctors have got me frustrated.


When I received his questions, I looked at the information of NJ Hazardous substance sheets, and sure enough, this 2-butoxyethanol does damage the testes. Partial Reply: In looking thru the NJ Hazard info sheet (6 pdf pages) It states p.2 http://www.state.nj.us/health/eoh/rtkweb/0275.pdf

Reproductive Hazard
2-butoxyEthanol may damage the testes
(male reproductive glands)

Note: Study shows 'gulf war syndrome' vets have fertility problems
www.gulfwarvets.com/ubb/Forum1/HTML/000215.html

_________________________

Coast Guardsman #2:

He called me and said that he was young during the `1989 service in Valdez, but because of his training he was going everywhere doing inpspections and such.

Recently he asked his doctors to check him for testicular seminoma. They did and he had it. Stage I

I shared these comments with CG#1 and he said, "A near identical diagnosis for him now, too"
____________________________

CG #3 I've spoken with a Coast Guardsman of those days who now lives in Valdez but works in another field. He has become very interested in my information, although he wasn't at first. In particular, he wanted more info on what 'rapid heart beat' would mean. He did say that the govt gives him a thorough physical every year ... due to various chemicals he has been exposed to ... that he is fine ... except that the red blood cell counts are a little low. (He hasn't been very open about his personal condition, but maybe doesn't know about the things that should be checked, as is often the case)
____________________________

Well the USA says she doesn't know about cancers and reproductive harm with 2-butoxyethanol chemicals. Isn't it time we found out? For sure our Military shouldn't give up the right to have healthy children just because they served their country. What are we doing to our bravest, our strongest, our best? www.valdezlink.com/generic.htm#fed

[enough already]

181. Scarlet fever

Scarlet fever and measals at the same time. Spent a month literally in bed and another month housebound in the summer of 1976.

[Carl Brennan]

182. Dermatographia

I got and still have it. It is a skin problem where you feel like you have poisin ivy all over your body. This is due to a histamine reaction from toxic contamination which I got in the Navy from cadmium and lead. I've been through 30 3 hour sessions of chelation therapy and it hasn't gone away. My cadmium, lead and arsenic levels were through the roof.

After taking hydroxizine for a few years I found that a common anti-histamine keeps the symptoms down.

[tyedyeto]

183. I've been very fortunate to be healthy (knock on wood) but.

one of brother's has myasthenia gravis.

<snip>
Myasthenia gravis: Most often, an acquired disorder that results in fatiguable muscle weakness, made worse by activity and improved with rest. It results from an autoimmune attack against the nerve-muscle junction. Other forms of the illness are caused by architectural changes of the nerve-muscle junction.
<snip>

He has been dealing with the disease for almost 30 years now.
Another bro had a hole in his brain fluid sack and had fluid leaking out his ear. Surgery fixed that one but we had a good time afterward teasing him about losing his mind. ;-)

[lonestarnot]

184. No, but the strangest thing I've ever heard got MSM coverage because

the guy was some Phoenix numbers guy, City Government. He had contracted cysterosis while in Mexico. Guess he ate some pork. Guess these little worms were eating his brain tissue. He got up on top of his Mercedes through the sun roof and was surfing on the top of his car. Fell off his board and busted himself. Poor thing. Happened very close to my Mother's house. Don't eat oinkers while in Mehico...

[Robeson]

186. Gastric Reflux Disease!

It was a real blast, until it burnt out the bottom of my esophagus, and my valve no longer worked to stop food from coming up, and then I had stomach surgery to correct it, and they had to reduce my stomach by about a third in order to creadt a new muscle for the bottom of my esophagus in order to keep food down. Yeah, it was real fun!

Does that qualify as an interesting disease?

[Shananigans]

200. Did you lose weight???

I think I have gastric reflux. I'd be all about reducing my stomach size!

[sniffa]

189. too many

weLL not diseases per se'

- as a young Lad, i became the first documented case of sudden nerve deafness. it's commonpLace for the eLderLy to suffer that type of hearing Loss but not a young kid. the docs were baffLed and originaLLy diagnosed me with some fataL kidney disease. LuckiLy, i was 5 and had no concept of Life or death, or that i'd Live to be 18 if i were Lucky. they were wrong btw, but my poor famiLy was freaked out untiL that diagnosis was shot down. they never figured out what happened but their best guess: a nerve eating virus got in there and ate the nerves.

many years Later - 20/21ish - i met the 2nd ever recorded case of SND in a chiLd by compLete fLuke. apparentLy, she was referred to the doctor(s) who poked and prodded at me.

- born with a extra vaLve downstairs that was causing some probLems. it's what Led to the originaL diagnosis of the kidney disease since both symptoms were found at/around the same time. the vaLve was discovered during an expLoratory surgery and removed. my red urine stopped, but now that kidney disease diagnosis was shot.

- a "Lavender vascuLar tumor"
around 12/13ish i had a moLe that grew at Least 10 times in size and bLed with a gust of wind. the doctor was amazed - and due to the size and rapid growth and bLeeding issued a dire prediction for me untiL a biopsy couLd be conducted. before the surgery though, many, many med students were brought in to poke and prod at me and ooh and ahh.

at this point in my Life, i had a good grasp on Life and death and was very scared. but, they cut it out, ran tests, and it was benign.

the above 3 aiLments of mine, made it into medicaL journaLs/books (or so i'm toLd. never bothered to try and find out).

[pookieblue]

190. I was dx'd with MS this year

But we (my Dr and I) think I have had it for at least 5yrs before I was diagnosed.

[Jean Louise Finch]

192. Dysentery

Awesome times. Just recovering now. Damn street vendors!

Had walking pneumonia my freshman summer of college. That really, really sucked.

And I have lipoma: a benign giant lump on my back by my shoulder blade. Totally harmless, but looks sort of weird.

[LanternWaste]

193. Cluster Headaches

Cluster Headaches since I was eighteen. I can time my watch by them in the middle of a cycle.

[hyphenate]

195. Well, I won't say it's very interesting

but I have a rash on both arms (no where else) that has doctors completely baffled, and without a diagnosis. It's somewhat eczemic, but it's also not responding to regular treatments. They have tried a biopsy with no results, and they have also included me in a "consult" meeting with about 25-30 dermatologists looking at me and poking. Still no answer.

It's been there pretty solidly for about 15 years with some expansion, but it hasn't really gone much farther than the backs of my hands and the arms.

Oh, I do have arthritis in the pisiform-triquetal part of the wrist, which is pretty rare.

Other than that, I suppose my list of ailments is pretty standard. Though there are a lot of them. :)

[nicolemrw]

199. my husband might have been written up in the new england journal of

medicine... his surgeon said he might.

see, he had a really bad case of either diverticulitis or diverticulosis, i forget which. the one which is worse. that forms infected pockets in the intestional lining. well his got so bad that it actually ate holes through the intestional wall and into his bladder. had to be surgically corrected of course... they took out, in the surgeons words "about this much" (holding fingers 6-8 inches apart) of intestine. he had a temporary colostomy but fortunatly they were able to reattach things later, so he recovered with no perminate problems. but it was such a bad mess in there, the surgeon was so impressed he said he migt write it up and submit it.