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mikecaven
03-11-2009, 04:10 AM
I am new to this forum. I was first diagnosed with WG in 1982. It stayed in remission until March of last year. I am back in remission now. I have a sense that WG may occur to "very healthy" people (e.g., people with very strong immune systems that, for some reason, over react on a given day for an unknown reason). I have always been extremely healthy other than for this two occurences. I am 61 now.

Thus, I am wondering if anyone else believes that they were "very healthy" prior to WG...and may concur with me that this disease "only happens" to very healthy people. I would be interested in hearing if anyone who has this disease WAS NOT healthy "before WG?"

Just a thought.

Mike

Sangye
03-11-2009, 06:50 AM
Good question. I was also extremely healthy before Wegs. After a childhood where I rarely even got a cold, I had a bad couple years in my 20's when I lived in Africa. I had malaria three times and many other tropical delights. I'd had about 20 vaccinations in a short time in order to go, and I do believe the assault on my immune system and all those toxins changed things after that. I was never sickly after it, but something wasn't quite right. Still, I was very strong. Wegs was a real surprise for me and when those who knew me found out, they were shocked.

My JHU doc said 90% of his Wegs patients were very healthy pre-Wegs (no diabetes, heart disease, in good shape, etc...) and this is one reason why it's so much harder for us to cope with it. We're not at all used to being sick or taking drugs.

I have numerous factors that I believe contributed to Wegs developing : altered immune system from overvaccination and possibly the malaria (not only does malaria cause a false positive for several autoimmune blood tests, but it's also been known to precede them), toxins from many sources, and a couple of very bad falls that rattled my spine. (My first Wegs symptoms started within a week of the second fall.) And, appreciating the mind-body connection, I'd also have to throw in a lifelong history of anger and grief. Anger in particular "inflames" the mind, and I believe the body follows suit.

Whatever the cause, I joke that I always had a killer immune system, and now I have a "killer" immune system! :D

andrew
03-11-2009, 07:18 AM
While not 'extremely healthy', I was quite fit (much, much fitter than now) although about 15kg overweight. In my childhood I'd had heart problems that stay with me to this day - more of a background thing than anything life threatening though. Was I healthy and fit though? I think so yes. I did also have an extremely high-pressure, long hours job that would have eventually killed me all by itself without Wegs coming into the equation :D

Dunno if I answered the question but that's how it was :)

Jack
03-11-2009, 07:48 AM
I was fit and healthy in an average sort of way. No illness, not overweight, but not much exercise. No medical history worth speaking of.
I was working on the coast in Italy and going swimming every day and think that I caught sinusitis from polluted water. I can only imagine that my immune system went wrong trying to fight off the infection. Who knows?

crackers
03-11-2009, 09:17 AM
same as everyone eles really.no medical history just the odd cold nothing more.had a bad attack of shingles in sept 06 started feeling rough in december.as jack says who knows.
john.

coffeelover
03-11-2009, 10:23 AM
I too was fairly healthy until the birth of my third child. I think stress is a big factor as I work in a stressful occupation and put quite a bit of stress on myself in general. (something I am trying to correct...a little to late)
Good Question!
coffeelover

Luce
03-11-2009, 11:50 PM
I was diagnosed back in October 2008 - at that point I was a 25 year old who was severely overweight and a moderate smoker. I'd never had anything other than the usual coughs/colds/flu and a couple of ear infections which in itself is probably quite remarkable. Although I was (and still am) overweight I was strong and could easily do an hour in the gym 3 times a week.

I think stress may have been a big factor in kicking the WG off in me, although doctors believe it was a throat infection which trigged my immune system to go into overdrive.
My pet rabbit had just died at 6 months old which left me devastated as I bonded with her as much as a dog owner bonds with their companion. I then went through a couple of weeks of battling with a rescue centre to rehome another bunny which I believe certainly contributed to my ill health.

Not sure how well I answered the question either, make of it what you will - not overly fit and healthy but with youth on my side :o)

coffeelover
03-12-2009, 03:05 AM
I had a pet rabbit too! HMMMM I wonder if there is any correlation? :confused:

Luce
03-12-2009, 04:15 AM
Are we saying rabbits cause WG?! :D

I don't know about stress and WG, my doctors don't seem to have an opinion one way or another and because I had the throat infection they see that as the leading cause.
However when you're stressed you feel run which I guess affects your immune system.

PS: I did eventually get new bunny (2 days before being admitted to hospital) from rescue centre, she is lovely and has a wonky ear!

andrew
03-12-2009, 06:56 AM
Perhaps the Monty Python boys had it right?

YouTube - Monty Python-Killer Rabbit (http://www.youtube.com/watch?v=pmu5sRIizdw)

jola57
03-12-2009, 03:38 PM
Oh Oh, I had rabbits too when in my 20's. Childhood pretty normal, colds, bronchitis and flu. I was diagnosed with toxoplasmosis when pregnant with 2 baby at 31, probablu due to either dog, cat or rabbit. At 32 diagnosed with hypothyroidism - Hashimotos - an autoimmune disease. Then in my 40s I had a Hong Kong flu and I think that from that day I started going downhill.

Sangye
03-13-2009, 01:31 AM
I had a rabbit in my teens (and another in my 20's). That was also the exact time Monty Python unleashed his killer rabbit, enticing millions of us innocent young people to become MP fans and endlessly imitate "sharp, pointy teeth." :eek: So we are saying that Wegs can definitely be traced back to the Brits, right? All in favor of this hypothesis?

...On second thought, I also had a dog, a canary and a cockatiel at the time. Maybe the canary did it. Dead parrot sketch? :rolleyes:

crackers
03-13-2009, 02:29 AM
whoa sangye you're beginning to sound like the spanish inquisition...........

Sangye
03-13-2009, 02:31 AM
I am rather inquisitive. And I lived in Spain. Speak Spanish. Oh no, I don't like where this is headed....

andrew
03-13-2009, 05:25 AM
...On second thought, I also had a dog, a canary and a cockatiel at the time. Maybe the canary did it. Dead parrot sketch? :rolleyes:

I wish to register a complaint!!! This parrot wot I bought here not 'arf an hour ago at this very boutique....is dead!

"Is this the right room for an arguement??"
"I've told you once"
"No you didn't"
"Yes I did"
"You most certainly did not"
"Let me make myself perfectly clear...I did"
....

Sorry. You've found my weakness...

crackers
03-13-2009, 06:57 AM
i've got an appointment tomorrow at the ministry of silly walks.(weggies dept).

Sangye
03-13-2009, 07:07 AM
Ohhhh noooo, this is also my weakness. All the times they said I was close to death-- maybe I was just pining for the fjords?

crackers
03-13-2009, 12:28 PM
well all i can say is "i'm a lumberjack and i'm ok" apart from WG.

jola57
03-14-2009, 12:21 AM
Well, at least nobody can deny that we are a humorous group.:D

crackers
03-14-2009, 02:20 AM
our sense of humour is the only thing we have that is unaffected by WG.so make the most of it.:)

coffeelover
03-14-2009, 07:40 AM
In my house it could be rabbits, birds, dogs fish you name it we have housed it. Thank goodness I am down to three dogs and 1 fish......:eek:
I am always grasping for a reason for my WG.....but you know it could just be because it is....I still think there is a bit of an inheritance factor involved.
Coffeelover

Doug
03-19-2009, 02:23 AM
I was in excellent health up to the time I was diagnosed, at age 55, to have WG. I quit smoking five years earlier and picked up 13kg almost instantly (it seemed!). I'd worked, at time of diagnosis, 30 years in Quality Assurance (primarily data analysis and floor projects to address quality issues) in a factory that makes industrial and hydraulic hoses. In my early years there, I was exposed to several industrial solvents on a daily basis. There are at least two studies funded in this country (USA) to study the solvents concerned as possible WG triggers. There still is that issue of onset suggesting an infectious agent. In addition, periodically (but not now) in past I used to make collages out of odd photos I'd found in magazines. I made them for the amusement of friends. The paste I used was rubber cement. After learning of the studies, I checked my rubber cement bottle: it had one of the industrial solvents concerned! I mention this because I ignored the caution about skin exposure in a big way. P.S. I had not one but three rabbits over time when I was a kid! And my job, from which I just retired the end of January 2003, was very stressful.

coffeelover
03-19-2009, 08:46 AM
My husband sold chemicals for a while and he brought cases home to store in our house. I always had a fear of them and maybe this is why?

I made him store them in the garage, but in the MN winters he had to store them in our basement. I still wonder if my exposure to chemicals in the air could be a precipitator to WG. There I go, grasping at straws again.
And the rabbit situation???? well that is another issue altogether.;)

Sangye
03-19-2009, 09:02 AM
I worked as a Research and Development chemist in my early 20's. One day while cleaning the lab, we discovered a huge glass bottle with a very old piece of tape on it, labelled "Unknown Chemical." The fume hoods in the lab were later discovered to be broken. Beside that, I had a great deal of chemical exposure in my 20's. Preceded, of course, by the two rabbits I already mentioned.

For now I'll call it "The Chemical-Rabbit Hypothesis," but with the hilarious people on this forum, I'm sure we can do better. Hop in, everyone!

germaine
03-19-2009, 01:55 PM
I think I was pretty healthy, gardening and walking and growing lots of organic things veggies. I did have minor high blood pressure, but had an odd incident a year and 1/4 before diagnoses, severe dizzyness, nausea and mildly pulsing chest pain over about 4 days. I was tested for heart disease and had a radioactive heart scan. Heaps of stess in my distant past, but happy mellow living for the last ten years. Maybe our pattern is a little too broad to tell us anything. Germaine

Doug
03-19-2009, 02:17 PM
p.s. Did I mention that I not only hugged those bunnies I had as a child. That they scratched? That I kissed them on their noses (body fluid transfer....?) I kissed my dog, too, but never on the nose, which brings us back to bunnies! http://www.wegeners-granulomatosis.com/forum/images/icons/icon6.gif:eek:
I also raised organic veggies and herbs and edible flowers. My garden was my joy, just as having to give it up a few years because of WG was hell on earth. To me, having something alive in my home (plants at this point since I have issues with where pets put their mouths!) is my celebration of life! I have three plants on my computer table. Sometimes, I stop typing and just touch them, enjoy their green solitude.

Sangye
03-20-2009, 12:34 AM
Beware the Bunnies!!!

It's a real testament to the need for research into the cause(s) of Wegs, when we're left wondering if kissing bunny noses is the culprit! :D

Sangye
03-20-2009, 04:36 AM
In a strange twist of fate, I just discovered this post (http://www.joshilynjackson.com/mt/archives/2009_03.html) on one of my favorite blogs by a novelist. If you go to her blog, it's today's entry (March 18, 2009, titled "Test Driving"). Maybe we should warn her?

Luce
03-20-2009, 06:47 AM
Aww, don't put her off bunnies - she sounds so excited to be meeting Rabbit.
As I started pointing the finger at rabbits I feel I must now stick up for them a bit as they are fantastic creatures to welcome into your home.
Mine lives outside in a hutch but comes indoors regularly and follows me from room to room, jumping up on the couch to sit next to me and sprawling on the floor when she's all tuckered out.
However she doesn't seem to like grass very much and picks her feet up as if walking on tip toes - I think she resents the ground being dirty as she constantly washes while on the grass in her run.
So although it is entirely possible that rabbits are secret WG carriers, lets not hold it against them eh?!

Sangye
03-20-2009, 07:01 AM
Luce!! Call your doctor right now-- I think you need emergency surgery to reinstall your funny bone.

The Rabbit Hypothesis is just a joke. I guess it could be hard to tell without seeing our faces cracking up laughing. Typing this, I misspelled Rabbit and typed Rabbi. I'm fairly certain they don't cause Wegs either. :D

crackers
03-20-2009, 11:03 AM
well i've just received an e-mail from Rabbits Against Wegs CARRiers and OTher Strange beliefs (RAW CARROTS for short).their spokes person,a mister bright eyes,states there is no scientific evidence to support the theory being put forward on this forum that cute little furry bunnies are to blame for our malaise.he also states that unless we desist from publicising this slanderous theory RAW CARROTS will sue our collective asses off.
john.

Sangye
03-20-2009, 11:40 AM
Couldn't you just see the headlines? "Raw Carrots Sue Weggies." Everyone would think there was a typo--that innocent vegetables were being legally persecuted by a carrot minority. :eek:

You've got me rolling with laughter, John. :D

Doug
03-20-2009, 12:35 PM
Just let you know this defamation isn't going to stop any time soon, please check my new avatar.....!

coffeelover
03-21-2009, 02:16 AM
There have been many a rabbit that have made the famous list...let's name them...
Peter Rabbit
Bugs Bunny
Easter Bunny

Hmmmm I am at a loss can anyone help me out?
My first rabbit was named Freckles and my second was named Bugs. both were fine companions, and I too loved to kiss them on the nose.
My next one (ha ha!) should be called WG just for "kicks" Bunny kicks that is.
Now that it is so close to Easter and real and Chocolate rabbits could be lurking everywhere......:rolleyes:

Sangye
03-21-2009, 02:44 AM
Googling "famous rabbits" produced this list (http://www.threelittleladiesrabbitry.com/famousrabbitindex.php). I know, I cheated. I was supposed to use the two brain cells I have left to think of names. But I am weak, and Google is strong.

My rabbits were named Cadbury and Dandelion.

Thanks for the heads up about Chocolate rabbits. I'm sure my rheumy just forgot to warn me the other day.

Luce
03-21-2009, 04:12 AM
Oh dear - I didnt mean to come across as the un-funny one. Perhaps my last post was a bit dead-pan and I apologise for that. I just didn't want people googling "Wegner's causes" and our postings to be found to be suggesting rabbits are a leading cause.
I do have a sense of humour, honestly!
Don't forget Roger Rabbit!
What about dust bunnies, you gotta watch out for those as they hide under sofas and on skirting boards. Then they'll appear when your mother comes to visit so she has an excuse to say your housework sucks.

Sorry again if I killed the mood, I just love my animals and wouldn't the finger pointed at them as being responsible for the weirdness we're all experiencing.

PS: My bunnies names have been Cosmo, Bucky, Domino and our current one is Barley.

Sangye
03-21-2009, 04:28 AM
LOL, I don't think you killed the mood at all. (On the contrary, I think we've all beefed up our jokes-- no offense to cows) Wegs has knocked my funny bone out of alignment more than a few times. I knew you'd be back. :)

Doug
03-21-2009, 04:35 AM
Humor is one soldier in the fight for life. I bet each of us realizes how much being able to laugh got us through some of the tougher times with this disease. In that spirit, I change my avatar- again- from Frankinbunny scaring little child to, well, whatever this is!

Carol
03-21-2009, 07:16 AM
I have a couple of theories why I got this disease
My sister and I both visited my parents who had an old dog with sores on it's feet which we decided needed to be put down. A couple of weeks later BOTH her and I - we live about 600kms apart - had massive lesions. The doctors never worked out what hers were - she didn't develop Wegs but I did. Did we catch the same virus we wonder, but our immune systems reacted differently. My rheumatologist was intrigued by this story and he has the photos of her lesions.
At the time I was stressed mentally with about 4 issues in my life. I had been thinking about having some counselling. After I got this disease I read a controversial book I had had on my shelf for years and not read - that you choose the disease that suits you. Very thought provoking. I have learnt many lessons since being sick. I have developed a number of affirmations to retrain my thoughts.
My health has has it's ups and downs but always I get over things - my doc commented on this - you always seem to be able to spring back from any medical problem- I say it's always because I work at it. I've have never been a person to get colds, only had the flu twice BUT I had dreadful sinus for about a year before Wegs. Did it cause Wegs or was it a symptom I wonder. I eat very healthily - except for a little bit of chocolate and despite what other Weggies say on this site I have continued to have a few wines each week - going out, entertaining at home etc and having a wine has been very important to my mental health. I have a large veggie patch - never use sprays and really work at making the soil healthy - with lots of green things to eat. I buy very few veggies over summer and make lots of preserves. I played tennis, did aquarobics, and generally did lots of things such as camping, boating, walking etc as part of my retirement. I'm back doing most things now except the tennis.
This dicussion as to WHY is interesting. thanks everyone.

Doug
03-21-2009, 11:48 AM
Intriguing! In a year in which I caught "the worst case of Herpes zoster I've ever seen" (per my GP, who's practiced roughly 30 years or so- it covered the right side of my face, nearly to my eye, under my cheek, down onto my shoulder); was hospitalized five times in three states for a total hospital time of five weeks; started to lose teeth (!) on the lower right side of my mouth for no reason I understood after nearly sixty years of never having to have dental work (other than cleaning!); was disagnosed by oral surgeons at Denver Health as being only the 39th or 40th instance of a person in the history of dental records (!) as having mandibular osteonecrosis; had to have removed by surgery "more than 50% the thickness of your mandible" (my oral surgeon); had so much post herpetic neuralgia I would scream in pain (had a crisis of faith, feared driving any distance for fear I'd be caught in traffic, screaming at the top of my lungs, in pain); saw an ENT, who passed me onto another ENT from Omaha, who gave me miserable news ("The best I can do is restore your hearing to 50%-60% in your right ear, but, because you have WG, it more likely would fail. The only other thing I can do is a cochlear implant, but even that probably won't give you much improvement."); who failed to contact me for a follow-up appointment the next time he came; followed by the physiatrist, who, blessed angel from heaven!, put me on Gabapentin and Tramadol to ease the post herpetic neuralgia. and more; all my primary doctor for WG, my pulmonologist could say was, "With you, it's one thing after another!"

Is the cup half full or half empty? Well, the ENT painted the inside of my right ear with gentian purple. I went to the Internet to try to find some medical purpose for gentian purple. I couldn't find anything to support it, so came to think that was to deter me from sticking my finger in it! Haw! I'm deaf, essentially, in the right ear.

I have a neat, jagged scar across my right cheek, my lip will require surgery to straighten out, but together they give me a pirate look that nearly justifies buying a parrot to balance my face. (Arrrrr, Polly, ye gots yer sea legs yet!) Half full, that's my cup! Call me Lucky! (Andrew- that alludes to a joke that goes around offices in the USA, and, I bet, other parts of the English speaking world: A poster with a missing dog: "He has three legs, is neutered, is blind in one eye, and is missing one ear. He goes by the name "Lucky"). What does this have to do with the previous posting: we Weggies all seem to have to deal with one thing after another.

I have an intense relationship with my pulmonolgist. I can talk with him about anything relating to my health. He tends to be the second opinion doctor I go to. I asked him once if I should think of any health issues post-WG onset as related to WG. He agreed that that was a safe bet, that while Herpes zoster isn't WG, the stresses of having WG and taking lots of immunosuppresant pills, for example, can make one more vulnerable to infection. Also, at the time I was under going Herpes zoster, I was in severe stress from three places. Also, I'm not obsessive about it, but I have become more careful about washing my hands when touching surfaces where people with colds are, for example. :p:confused:

p.s. Retiring on January 31, 2009, took care of lots of the stress!

coffeelover
03-22-2009, 02:57 AM
OH yeah!
Thumper
Trix and that scarey diseased rabbit.....the Velveteen Rabbit!

In regards to Carols comment on "working" at making herself better....
Does anyone have a nutrition diet that has been a "cure all" of sorts. My rheumy mentioned that she has a WG patient who started to see a dietician (an expense I prefer not to have) and swears by her new found diet? Is this wishfull thinking or is there some truth in that? Opinions?
LIsa Coffeelover (and don't tell me to give up coffee!)

Sangye
03-22-2009, 03:17 AM
Hi Lisa,
While there's no "one size fits all" when it comes to nutrition, there is a lot you can do on your own without paying a dietician. Google "anti-inflammatory diet" and you'll find tons of books, lists, etc... Wegs is an inflammatory disease. Keep the inflammation down, and you have a better chance of keeping the Wegs down, too.

(Supplements, herb and natural remedies are a different matter. You need to see a holistic doctor for that. Wegs is tricky business-- following what you read in a book or asking a health food store clerk is just not safe.)

Ah, coffee. I see you looove the stuff. I won't tell you to give it up, but try to keep it to regular (ie, not espresso), and no more than 2 cups a day. REAL coffee cups, not the cereal bowl ones.... More than that is PRO-inflammatory, meaning it's creating inflammation. It also overacidifies the stomach, making pred harder on you.

And the biggest problem is that it "whips" the adrenal glands to make adrenaline (this is why you get a caffeine high). When you're sick, your adrenals are already wiped out. Pred basically shuts them down. So asking them to do MORE stresses them to an unbelievable degree. It will weaken you considerably over time, and you'll have a much harder time getting strong again. Weaker adrenals also mean you're more susceptible to infections, your brain chemicals are more likely to be imbalanced (eg, more anxiety, depression, inability to deal with stress), and it's much easier to injure yourself (adrenal weakness causes ligament weakness).

Worth keeping your coffee intake low? :rolleyes:

Doug
03-22-2009, 04:15 AM
Great additions to the Famous Bunnies Hall of Fame!

I was told to eat "normally", though my doctor did put me on Vytorin. "I could put you on a diet for this, but you would not like it...!" Yeah, from how he discribed it, I'd probably wish for a bunny to hop over and clean up my plate: a high fiber diet it was with lots of oatmeal and other scary things. You'd have to move your computer to the bathroom to use this diet!

If there is a real diet Weggies can flourish on, I would be interested to know about it myself.

(p.s. Trigger is the name for the giant rabbit in my avatar)

Sangye
03-22-2009, 04:37 AM
It's sad that most MDs don't even recommend for their patients work with diet to improve their health. I understand if they don't feel comfortable with making recommendations, but they tend not to refer patients to those who do. Telling someone to eat "normally" without further discussion is just unacceptable, in my opinion. "Normal" to most Americans is a very inflammatory, disease-promoting diet. Guess he wants to keep his Vytorin sales rep happy.

A healthy diet isn't necessarily boring, and it won't keep you in the bathrooom. Andrew Weil has some good books. Not that he invented it-- he just figured out how to market what holistic docs have been telling their patients for 100+ years. I'm just glad the public loves his stuff, because it means more people are eating and living healthy.

On a more important topic, I think Thumper is my all-time favorite rabbit. Well, I dunno...maybe it's "Rabbit" from Winnie the Pooh. Remember how fast he talked? The guy was totally on pred.

Doug
03-22-2009, 05:27 AM
It's sad that most MDs don't even recommend for their patients work with diet to improve their health. I understand if they don't feel comfortable with making recommendations, but they tend not to refer patients to those who do. Telling someone to eat "normally" without further discussion is just unacceptable, in my opinion. "Normal" to most Americans is a very inflammatory, disease-promoting diet. Guess he wants to keep his Vytorin sales rep happy.

A healthy diet isn't necessarily boring, and it won't keep you in the bathrooom. Andrew Weil has some good books. Not that he invented it-- he just figured out how to market what holistic docs have been telling their patients for 100+ years. I'm just glad the public loves his stuff, because it means more people are eating and living healthy.

On a more important topic, I think Thumper is my all-time favorite rabbit. Well, I dunno...maybe it's "Rabbit" from Winnie the Pooh. Remember how fast he talked? The guy was totally on pred.


Sangye- I will head for the web soon as I finish this "Thank you for you recommendation!" note. Please give Dr. S., my pulmonologist, a bit of credit, however, as he did give me a general "does" and "don't" sort of talk after asking specific things about how I do eat. He didn't exclude oatmeal (Hey! my primary cultural, ancestral background is Scottish, so you know I eat my oatmeal!) or dead animal flesh, which I barely can choke down anyway: my idea of a good meal doesn't include a 16 oz. steak. He did note the food pyramid (for non-US readers, that's the US Government's way of presenting how many portions of any given foodstuff one should have a day. I'm sure it's on the web.) as a basic guideline, but that I could contact a dietician for more in depth detail. At the time, my next door neighbor (I live in a small town of barely over 8000 people) and good friend just happened to be, tuh-duh!- the local hospital's dietician! Later, when I was going through all of the Herpes zoster issues, I did have a dietician walk me through healthy eating. I know nothing short of a veggan diet is suitable for a Buddhist nun, and, sitting here in the middle of cattle country, it still would be best for me, too. I am a bit shy of anyone making nuitrition claims as that approaches religion in our culture. A friend of mine at work, as mentioned in another posting, wanted me to drop all medications because medicine is poison (which, in controlled doses, it definitely is!) and control my disease with natural herbs. Two members of her family have/had (one died) MS. I don't know what her sister said if my friend told her natural herbs would cure her MS, but I remember well how her mother handled such things, "Sweetie, I love you 'cause I'm your mother, but if you think you can cure MS with herbs, you can .....- fill in the blank! Anything to get off Vytorin, which has a bit of a reputation now anyway, eh! :)

Sangye
03-22-2009, 05:45 AM
Doug, even way out in Nebraska, I bet you heard my "Ugh" as you referred to the Food Pyramid. You'll see what I mean if you check out Weil's stuff.

Actually, I'm not a vegetarian. Vegetarianism is not very healthy, and veganism is deadly. I was a vegetarian for many years and really wiped out my adrenals. Took me years to build them back up. Vegetarianism is not widely practiced in Tibetan Buddhism-- even the Dalai Lama eats meat. Theravadan Buddhists (mostly southeast Asia) are usually vegetarians.

And yeah, substituting herbs or supplements for drugs is a sure way to die from Wegs. (Not true for many other autoimmune diseases. MS can be treated quite successfully using a combination of holistic and allopathic medicine. And--sorry to Mom--there have been cures using holistic medicine only. :eek: )

Doug
03-22-2009, 05:57 AM
Interesting! Well, never let it be said I know everything! I did check out Dr. Weil's website (He looks like my brother!). He's just come out with his own pyramid, one that looks more do-able to me than the government one. Don't give up on me yet, Sangye! I have chores this afternoon, so need to get off the computer for a time, see if my legs still function for all of the time I've spent on the Internet since I gained access to it. (Oh, man! If you want the ride of your life, download Google Earth. You can visit virtually anywhere in the world, including Carhenge, a building where I lived while stationed in Germany, all the major capitals of the world and all the minor ones, too. There are videos on some. You can... well, this is off topic.)

andrew
03-22-2009, 07:44 AM
I've just spent a very pleasant 20 mins catching up on this thread. You guys are very funny!!:D Who knew!? Hehehehe


(Oh, man! If you want the ride of your life, download Google Earth. You can visit virtually anywhere in the world, including Carhenge, a building where I lived while stationed in Germany, all the major capitals of the world and all the minor ones, too. There are videos on some. You can... well, this is off topic.)

Yeah Google Earth is amazing. My start location is Pevek in Russia. I want to go there one day.



If there is a real diet Weggies can flourish on, I would be interested to know about it myself.

(p.s. Trigger is the name for the giant rabbit in my avatar)

As Sangye said, there's a lot of information on anti-inflammatory diets. A couple here though:

A friend of mine has a site with info: Anti-Inflammatory Foods (http://www.wegenersgranulomatosis.net/Anti-Inflammatory_Foods.html)

Also this one is good. Hasn't been updated for quite some time but Cyndi does some good work: Cyndi's Page (http://cyndispage.blogspot.com/)


Worth keeping your coffee intake low? :rolleyes:

Sigh...I must admit to being a coffee freak. I love the stuff. I was however on the wagon for quite some time and fell off it again about a year ago. I'm scoffing up to four cups a day, sometimes more. Generallywill stick to two but might have to be more stringent based on above comments. :eek:

Also, I have attached an image of the WG molecule we all have. Just so it's clear what the cause is :D

Doug...that is a truly bizarre avatar!

Luce
03-22-2009, 07:48 AM
Back to rabbits (I'm determined to make up for my earlier post), what about Dylan from The Magic Roundabout?
He was a weggie in my opinion as he never had any energy and was always dozing off!

andrew
03-22-2009, 08:12 AM
BAHAHAHAHAHA, yes you could have a point there.

What about an analogy between WG and the movie Harvey.

James Stewart had his own personal rabbit that no one else could see. Even though they couldn't see it, they could see what affect it had!

Oh wow, that was deep. I think my blood sugar must be low. Gonna go lie down....:D

Sangye
03-22-2009, 08:14 AM
Andrew, good to have a pic of the demon DNA scurrying about in our vascular systems. I found its cousin (http://www.sirlistalot.com/wp-content/uploads/2007/10/were-rabbit.jpg), which explains a lot of the variation in symptoms we have.

Luce-- you're a trooper. :)

andrew
03-22-2009, 09:04 AM
I found its cousin (http://www.sirlistalot.com/wp-content/uploads/2007/10/were-rabbit.jpg), which explains a lot of the variation in symptoms we have.

Yoiks!!! The Were-predrabbit!!! Looks just like me when I'm on the Pred.

Sangye
03-22-2009, 09:10 AM
Omigosh, I didn't even realize that it totally has that pred look-- even the buffalo hump and the kinda crazed look in the eyes. LOL...

Doug
03-22-2009, 09:31 AM
Andrew remembered the one I wanted to bring up! Yes, that was a funny movie. Anything with Jimmie Stewart or June Alison (spelling?). Other than having some vague feeling for Marilyn Monroe (I later learned it was "lust", but what can a 10 year old do about that- wait, I don't want to hear: remember, I'm a Presbyterian elder! Har!) the real growing-up-in-the-50's hottie was Grace Kelly: when she and Der Bingle sing "True Love" in the boat, whew! Grace Kelly met a prince or something and soon was off the hottie charts, popping out heirs and errors. Haw!

Doug
03-22-2009, 09:35 AM
Demon Rabbit: That one takes the cake! Best one yet.

coffeelover
03-24-2009, 03:20 AM
I Love the Demon Bunny! You guys are great!

In regards to diets on WG-Thank you all for your advice. I had already (due to acide reflux) put myself on a high fiber diet (oatmeal, flaxseed, etc) And that does seem to help and I certainly am feeling better, most of the time.
I too am from "beef" country and I know fish is full of those Omega 3's, but I too love my occasional beef. I just limit myself and eat "more" fish and chicken.
I re joined weightwatchers as they teach me how to stay within a reasonable amount of food intake and I can get pretty creative with a salad! This is a true "bunny" type diet. (fruits, greens, vegies!)
Maybe we evolved from this creature??:D
Oh yeah...I try to drink one normal size, but expresso type coffee daily (sometimes I have two cups) but this is definately limited compared to where I originally was.
LIsa

Doug
03-24-2009, 04:22 AM
Coffeelover

Is that espresso in a regular-sized normal cup, or a REGULAR COFFEE MANIAC FROM HELL INFUSED WITH PREDNISONE-sized cup? Come on, you are among friends. Really! Haw! :cool:

P.S. I see we have a New Posts tab improvement! Scary but appropriate.

p.p.s It's great when you finally get that reflux in control! Good for you!

Jack
03-24-2009, 08:43 AM
I'm ashamed to admit it, but I do tend to use coffee as medication. It does my Potassium levels no good at all. :(

andrew
03-24-2009, 08:57 AM
I'm ashamed to admit it, but I do tend to use coffee as medication. It does my Potassium levels no good at all. :(

Yes, me too. Seeing as it's confession time, when I have the flu I take two flu tabs with a cup of coffee. Gets me feeling good in no time :o:eek:

Doug
03-24-2009, 10:53 AM
I think some of us (me included) have some 'splaining to do! Though we all are responsible for our own health and how we follow doctor's instructions, one think I feel we need to remember: a short life with coffee is better than a century of living without! :p Jack's the Weggie with the longest experience with it, so I say "Coffee drinkers, walk with Jack!" (This message has not been endorsed by the American Medical Association. Haw!) Flu tablwets, prescription drugs: I wash mine down with my morning coffee, too! :D

Jack
03-24-2009, 06:59 PM
one think I feel we need to remember: a short life with coffee is better than a century of living without!
On a slightly more serious note - I have actually had the thought that I would rather have a heart attack due to high potassium levels than slowly waste away, getting less able each day. :( I came to terms with dying some time ago.


There's a happy thought to start the day with! :)

andrew
03-24-2009, 08:02 PM
I have actually had the thought that I would rather have a heart attack due to high potassium levels than slowly waste away

Sorry to hear that Jack but I kinda understand. Certainly the effects of this disease can be as much mental as physical. You've got a bunch of people here rootin' for ya though!

crackers
03-24-2009, 08:27 PM
there are some mornings when i wake up feeling less than optimstic but i usually stick some musc on (loud)and that works for me.i find AC/DC very theraputic.
john

andrew
03-24-2009, 08:32 PM
i usually stick some musc on (loud)and that works for me.i find AC/DC very theraputic.
john

Oh verilly. Loud music is awesome for mood adjustment. I usually use Motorhead or Rammstein :D

crackers
03-24-2009, 08:38 PM
with you there on rammstein but only when the wife is out.it bugs her cos she can't understand what they're singing.neither can i but who cares.
john

Jack
03-25-2009, 01:51 AM
Thanks for your thoughts. :)

Don't get me wrong, I'm not depressed with thoughts of dying, its just something you have to consider when you'r getting older and your health is not exactly improving. My parents both died quite suddenly in their late 80s. My mother-in-law spent her last year in hospital in a terrible state. I know which I would prefer!

Doug
03-25-2009, 02:45 AM
Jack-

There's a big difference between acceptance that one will die and submission to it. Where Weggies get a wake up call before most people, I guess, it's hard for those not in a similar circumstance to understand that acceptance isn't necessarily giving up, nor is dying younger necessarily worse than dying at an older age. It's a complex process.

Regardless, glad you aren't in submission! I look forward to your posts!

coffeelover
03-25-2009, 02:21 PM
[quote=Doug;1450]Coffeelover

Is that espresso in a regular-sized normal cup, or a REGULAR COFFEE MANIAC FROM HELL INFUSED WITH PREDNISONE-sized cup?

Normal sized cup .....that's my story and I am sticking to it! :D

I have been busy the past few days, so I have not been online. Missed you all! YOu are the highlight of myday most days!

I did spend today shopping for that anti inflamatory dietm most of which I was already doing anyway.....but today I took two 1/2 hours shopping to get ingredients and food types not already in my cupboards. I tend to obsess once I start something....so I will keep you all informed of my progress. I will try to add the exersize component if my breathing allows.

Maybe, just maybe I could possibly lose some pred weight?????:eek:

Lisa

coffeelover
03-25-2009, 02:24 PM
I am with you there Jack and Andrew. Gotta have one vice!

We are a bunch of WEGGIE REBELS! Maybe we can start our own band?
Lisa

Doug
03-25-2009, 03:52 PM
Well, yeah! That's the whole idea behind being opinionated! I'll try to cool it this time, let others bask a bit, let my mind absorb others' thoughts and opinions for a change. :cool:

Where is our Sangye? She's the one who got our Lisa shopping for the right foods for a Weggie diet. I look forward to hearing how things go on your diet, Lisa. :confused:

The last time my bloodwork indicated a dietary deficiency, B12 shots took care of it. I guess Procrit for anemia might rightly fit into that category, too. Both of those happened early in my treatment, but haven't bothered me in roughly three years out of the six I've been a Weggie (onset through today).:)

(It's wise of Andrew to allow one to disable text smilies because some of us can't stop inserting them into our texts!!):eek:

andrew
03-25-2009, 06:14 PM
(It's wise of Andrew to allow one to disable text smilies because some of us can't stop inserting them into our texts!!):eek:

S'ok Doug, there's a linit of 5 that you can insert so I can keep you under control :D

Lisa, it'd be great to hear how you go with the anti-inflammatory foods, especially if they can get some pred weight off!!

Sangye
03-26-2009, 01:07 AM
Where is our Sangye? She's the one who got our Lisa shopping for the right foods for a Weggie diet.

Sangye has been contemplating how to say this :

I believe the whole "quality of life vs quantity" issue is often misunderstood.
We say things like, "I'd rather have a shorter life with my cookies and coffee, than a longer life without." But that's not really the trade-off. The "shorter life" option doesn't necessarily mean a sudden death, and the "longer life" option doesn't mean a pleasant life. We're more likely to wind up living with chronic fatigue, increased pain, heart attacks, strokes, cancer, diabetes, etc... than we are of dying suddenly from them.

We Weggies already have so much damage from drugs and disease, that it can only help us to keep the remaining parts working.

From a biochemical perspective, anything that stresses the adrenals (eg, emotional stress, overexertion, caffeine, sugar) actually increases the effects of Pred. It's like taking higher doses. Let that sink in for a sec....

So our "goodies" are maybe not so good, because they increase irritability, weight gain, depression, anxiety, tissue damage, immune suppression, healing time, etc.... And unlike pred, they also increase inflammation.

If we're talking quality of life, we gotta consider the facts.

I don't believe we need to cut out everything and live on wheat grass juice. That's the other extreme, and there's no quality of life in that. (Have ya tasted that stuff?? :p)

It's about balance.

(Sangye steps down from her soapbox...)

Doug
03-26-2009, 02:38 AM
...it is possible to reach a point where the effects of WG are minimal, where Prednisone isn't one of your prescription drugs, where you take only Bactrim to maintain remission, where you are a Weggitarian by history, certainly, but are at peace with that. I don't have a handicap parking permit. Don't qualify! Um Gottes willen I will live till I'm in my 90's like both my parents and two of my grandparents. I may even stay in remission until I die. I may walk into a truck tomorrow, and fulfill that last statement: he was in remission until he died. Life is like that, so I intend to :) because life is good, no matter the outcome, and for one who believes, certainly, because of the outcome.

coffeelover
03-26-2009, 04:16 AM
Sangye and all,

I truley appreciate the words of wisdom and the diet information is invaluable. So Thank you! Thank You! Thank You!
I am going to take Sangye advice on the coffee, but first things first. I will start on this diet, then gradually cut myself down on the coffee. I did know it added to the Pred high and I like that high, but know I shouldn't as eventually I hope to get off the dreaded pred.
I am supposed to see my ENT in late May and then Hopefully (maybe) get my trach out, but I am thinking that my remission is not coming around as fast as all doc and myself had hoped. In reading today's posts, I see that is not an uncommon occurance. DRAT and DARN!
Doug is right. Life is good despite our illness and complications, so I will continue to live it the best way I know how.
BTW-I want a handicap sticker. Do you think they will give me one? After all, (using my trach to my advantage) I have a trach because of breathing issues. I really should park closer to the door...don't you think?
LIsa Coffeelover

Doug
03-26-2009, 06:25 AM
You just might. I don't know the law in your state, but in Nebraska the requirement is that a person is unable to walk more than 200 ft. without assistance. Your doctor probably can guide you on whether you meet the requirements in your state. Even if you need it just until you get a bit stronger, there are temporary permits, in my state at least. It's worth looking into.

Sangye
03-26-2009, 07:32 AM
Lisa,
Getting a handicap permit was the smartest thing I did. I've had 6 month (temporary) ones for more than 2.5 years, always thinking there's NO WAY I'll still need it in 6 months. And yet I do....

You can still park in regular spaces if you're feeling strong enough to walk. And the permit allows you to park in any metered space in the country for free. This has saved me a lot of money at JHU, where they charge for parking. Get the hanging placard if you use more than one car (as opposed to the license plate, which is only for permanent disability).

Jack
03-26-2009, 07:42 AM
I also have a parking permit and it is a great help. There is almost no on-street parking in most shopping streets in England, but the permit lets me park right outside in most cases. I can also use some car parks for free, but not at the hospitals!

RCOSSIO
04-02-2009, 12:45 PM
Thanks Sangye...I guess going to the drive thru and getting a number one meal is OUT FOREVER!!!!

Not that I like it that much!!!!

Sangye
04-03-2009, 02:36 AM
Nah-- you can have your #1 meal, just don't have it often. If I'm travelling, sometimes I wind up eating fast food frequently. I try to keep it balanced by getting a salad, fruit, etc... squeezed in among the garbage. It makes a difference. :)

coffeelover
04-03-2009, 04:25 AM
FYI all you fast food eaters!

One week on the anti inflamatory food diet (with a bit of cheating as I have no will power whatsoever) I lost 1.4 pounds!!!!!
I feel energetic, I am feeling better than I have in a while and I highly recommend the added grocery expense.
I plan to continue and will keep you all updated.
Lisa

andrew
04-03-2009, 05:24 AM
That's awesome!!! I think you have more willpower than you think you do! Keep it going, well done!

jola57
04-03-2009, 05:13 PM
That's great Lisa,
I too am going to try to lose some lbs this month since I will be going to Europe for my nephew's 1st communion and they have never seen me with over 210 lbs (on my last visit I was healthy 155lb) so I too need good pep talk. And food tastes so goooood these days. I know that I should excercise but it still hurts too much.

coffeelover
04-04-2009, 01:19 AM
Jola,
I know what you mean about food tasting so good. For me it was a matter of getting used to not eating the sweets and munching on the "good" stuff. Now THAT food tastes good and I no longer am craving the sweets as much. I started making fruit smoothies (with water or soy milk) as a dessert and that satisfies my cravings for something sweet.

I can now make the best salad and when I go to a restaurant salad bar, I am deeply disappointed. I love the kale lettuce, spinach and all the additions including olives and fruit.....all of which are high in antiinflamatory ingredients.

Yes...exercise is a tough one when you are hurting. every little bit counts as far as I am concerned, so if you can do something for 5 minutes it is better than nothing. That is how I started out and as I started feeling a bit better, I added. I still only walk about 30 minutes in the morning and sometimes I do an evening shorter walk. My walks range from a strolll to a quick walk, but I am usually in the leisure category as I feel I am not yet ready for that pumping it up tempo.

best of luck with your new life eating habits. ( i refuse to call it a diet)
Lisa

pberggren1
04-04-2009, 07:55 AM
Jola,

Are you Catholic as well?

Are you originally from a European country?

Where in Europe does your nephew live?

coffeelover
04-06-2009, 01:20 PM
Phil,

I know this is taboo subject for this forum, but you seem to want to know who on here is Catholic. I am a practicing Catholic.
I truly believe that each of us can choose what we want to believe in and I respect everyones beliefs and lack there of. Unless specifically directed, I promise to not bring up religion again. Please don't kick me off, I like this group!
Lisa

jola57
04-08-2009, 04:34 PM
Yes, I'm Roman Catholic, nephew lives in Poland. While there i will be visiting a rheumatological spa for a week in Sopot - don't know if they offer treatments suitable for WG, but will find out. My cold/flu is now in my chest and I cough and cough.
Sometimes it feels like I have someone else breathing in my throat.

coffeelover
04-09-2009, 01:12 AM
That cold is going around southern MN as well. MY daughter has been in bed for 5 days with it and I was trying to stay clear of her the best I could. With a trach, you don't want to have a cold!
Been there! Done that! Not a good thing. Mucus every where.

I hope your recovery is quick.
Lisa

pberggren1
04-09-2009, 03:57 PM
Hi Jolanta,

I hope you have a good trip to Europe. Let us know how it goes. That spa sounds wonderful. Hopefully it gives you some relief. My brother lives in Salmon Arm and used to live in Langley. Have a joyous Easter.

Over and Out,
Phil of the north

pberggren1
04-09-2009, 04:00 PM
Hi Lisa,

What part of Minnesota do you live? I have relatives in Willmar and Brainerd.

Over and Out,
Phil of the north

coffeelover
04-10-2009, 11:00 AM
PHil,

I am fairly close to Wilmar (2 hours away). I live in southern MN and work in Mankato. Do you ever come to visit your relatives?

LIsa

pberggren1
04-10-2009, 11:30 AM
Lisa,

The last time I was down to MN was when I was about 3 or 4, close to 30 years ago. I would like to come to visit my relatives and you as well. I hear southern MN is very beautiful.

Over and Out,
Phil of the north

coffeelover
04-10-2009, 11:43 AM
Phil,

Tell me when you will be down this way and I will be glad to meet with you. I could put you up at my motel if you'd like, just let me know.

LIsa

pberggren1
04-10-2009, 11:48 AM
Lisa,

I would love to do a road trip this fall. Do you own a hotel?

Over and Out,
Phil of the north

coffeelover
04-10-2009, 11:51 AM
I do. In Mankato. This forum is not for advertising, so I will not name the hotel.
LIsa

Shannon T
04-10-2009, 02:00 PM
I am 63 and had been healthy all my life. Moderate exercise, not overweight. Last November I was walking my dogs and had a serious fall that pulled a groin muscle which failed to heal for 5 months. During that time other medical problems started and in April got this diagnosis.

I feel that I might have been balanced before the fall and something changed as a result of the trauma. Not a physicians so don't know.

Sangye
04-10-2009, 10:28 PM
Shannon, I had the same thing. Mine started with a bad fall--straight down on my spine. Actually, about 6 months before that, I took a horrible fall (same thing, but worse) on rollerblades, and the next day became seriously ill with some weird virus. I lost hearing in both ears and was very sick for about 6 weeks. Then last year, another big fall, and Wegs symptoms flared again.

I'm a chiropractor, and we know for a fact that rattling the spine like that affects one's immunity. Many people get colds, flu, etc... right after a bad fall. Was my Wegs already brewing? Dunno. But the first and second falls sure turned up the heat!

Good idea to see a chiropractor in your area and get some good adjustments. I'm not saying it will cure Wegs-- that egg is probably already boiled-- but it may reduce your symptoms and bring down the Wegs fire. If you want more info about how to find a good chiro, what you must tell them about Wegs, etc... let me know.

coffeelover
04-11-2009, 06:56 AM
Nice to know Sangye! Prior to my trach and diagnosis, I was seeing a chiro because it DID make me feel better. Since my trach I have been avoiding the chiro as I am not sure how he will maneuver around the trach? Can you give me some guidance here?
Lisa

Doug
04-11-2009, 08:24 AM
Ah ha! I thought our Sangye was awfully well informed for a layman! A chiropractor! You hold your light under a bushel very well, my friend!

Shannon T
04-11-2009, 01:35 PM
Sangye,
I would appreciate a referral. I live in Houston.

Did your hearing return?

Shannon

Sangye
04-12-2009, 01:49 AM
(Well, sheesh... I wrote this big long reply last night and I guess I didn't hit "Post" because it ain't here!)

Doug, that's a very funny expression! But nah, I've outed myself as a chiropractor on this forum a bunch of times. Maybe that plant got in your way? :D

Lisa, your chiropractor will know how to protect your trach. There are many ways to adjust someone. There are some chiros out there who are so stuck in their particular ways that they'll say it's impossible. If that happens, find someone with proper training-- we're trained to safely adjust people of all ages and sizes, with all kinds of complications, physical limits, surgical changes, etc....

The most important thing to explain is that you can't mess with the immune system. This will take some 'splaining, because treating autoimmune diseases by suppressing the immune system is the exact opposite way holistic docs treat them. When you explain your Wegs treatment, don't be surprised when your holistic doc rolls his/her eyes, and behaves just as obnoxiously as your medical docs do when you talk about using holistic medicine.

They will say, "Holistic medicine has treated all kinds of autoimmune diseases successfully--sometimes even cured them." That's true. However, it's important to point out that they can't extrapolate from the successful holistic treatment of most other autoimmune diseases like RA, MS, etc.... Those will not kill you and their symptoms are more obvious. So you can afford a little trial and error. We don't have that cushion with Wegs. It can silently cause damage and can become deadly quickly. There is not a single case in the literature of a Weggie being treated with holistic treatment. I nearly killed myself by treating it exclusively holistically. (I didn't know I had Wegs.) I've heard from others who almost died or suffered permanent damage doing the same.

There are many, many ways holistic medicine can help you. They just have to avoid two things :
1) Boosting or "modulating/regulating" the immune system. Both counteract the drugs.
2) Detoxing you-- this can release deadly amounts of residual drugs into your system, and make your body dump the drugs you are currently taking.

Basically, your holistic doc has to "buy in" to what you're doing, or they'll make you miserable. This is a complete paradigm shift for them, so it may take a few visits. If they don't relent, I suggest you move on. I know how stubborn "my people" can be!

Recently I fired a chiropractor who constantly said or insinuated that the Wegs treatment was killing me. No matter what I came in with-- even simple things that had nothing to do with Wegs or the drugs-- he'd say, "Your body is giving out because of the drugs. The treatment is killing you. You need to tell the MDs to stop the treatment." He ignored the fact that I've actually gotten stronger on the drugs, compared to pre-treatment. He didn't want to hear that--couldn't hear that.

My chiro from Arizona, however, understood the situation right away and helped me tremendously.

Because I know that sometimes it's easier to hear this from a peer (who happens to have Wegs), I'm happy to talk with anyone's holistic doc about it. Just send me their name, phone number and US time zone. I won't discuss your particular case-- that would involve more complicated legalities-- but I can help them understand Wegs in general and how they can help.

Doug
04-12-2009, 02:46 AM
No kidding? Maybe I should come out from behind the peace lily a little more often! I can't imagine how I missed it. Anyway, the company where I worked up till retirement added coverage for several alternative forms of medicine two or three years ago, in recognition of things brought out in many of Sangye's postings. Treatments like chiropracty and acupuncture have been known to be beneficial for years, but credible practioners of nuitritional approaches to health have the onus of many snake oil (or pill!) peddlers mixed in with them to overcome.

andrew
04-12-2009, 08:24 AM
No kidding? Maybe I should come out from behind the peace lily a little more often!

LOL @ Doug

My health unsurer has a bunch of benefits for natural therapies such as acupuncture, homoeopathy, naturopathy and remedial massage, none of which I've tried since diagnosis. Probably won't either at least for a while until I ge a bit more 'together'.

Doug
04-12-2009, 09:35 AM
I am not adventurous enough to try alternative therapies, perhaps because my company's insurer only pays 80% of the cost, whereas I pay nothing after I meet my deductible of US$1550 when I go to conventional caregivers, or however you'd put it. (1056.48 British pounds/1900.68 Canadian dollars/2153.41 Australian dollars- there! That takes care of us all, I think! Though the Canadian dollar conversion looks wrong to me... I'm using a conversion pop-up that may be dated). The closest I've come to alternate therapies is the physiatrist.

Sangye
04-12-2009, 09:48 AM
The closest I've come to alternate therapies is the physiatrist.

That ain't so close! A Physiatrist is an MD who specializes in physical medicine and rehab. I only recently learned that, since I'm going to see one in a few weeks. Before that, I'd only heard the name physiatrist on rare occasions, usually in the sentence, "What's a physiatrist?" :D

Doug
04-12-2009, 09:59 AM
That ain't so close! A Physiatrist is an MD who specializes in physical medicine and rehab. I only recently learned that, since I'm going to see one in a few weeks. Before that, I'd only heard the name physiatrist on rare occasions, usually in the sentence, "What's a physiatrist?" :D

The physiatrist I go to told me that "physiatrist" is more commonly used in your part of the US, and they call themselves something closer to Dr. Blahblah, MD, Physical and Rehabilative Medicine, here. Oddly, she calls herself a physiatrist! I hope your experience with yours Is as positive as mine was. She helped me manage postherpetic neuralgia, as I think I mentioned in another posting. Long term pain is, well, what am I telling this forum that everyone doesn't know to some degree?! Physiatry is a fairly new specialty, I understand, perhaps as new as the 1930's or 1940's. I hadn't heard about until my ENT doctor brought the possibility of seeing the physiatrist to my attention.

Sangye
04-12-2009, 12:39 PM
I think the reason there are more physiatrists out here is that they're all at Walter Reed Hospital. Well, the majority are, anyway. I had a hard time finding one who wasn't--hope she's good.

Doug
04-12-2009, 02:28 PM
Without intending to be political, it makes sense. For the most part, the electrical shocks aren't that bad and the needles are very small!

Sangye
04-12-2009, 11:11 PM
Electric shocks and needles? You talking about the PT equipment called a Tens Unit? They put electrodes on a muscle and send little electric shocks into it to make it contract. That helps it pump out inflammation and relax muscle spasms. It's just temporary relief-- as soon as you're up and about, the whole thing spasms up again!

I won't be needing that-- had it years ago, though.

Doug
04-13-2009, 12:04 AM
No, these send an electrical impulse into a specific muscle to establish nerve connectivity. Sort of like a reflex test for one muscle. In my case, with herpes zoster damage to nerves in my face (look at the right side of my face in the videos- it's subtle, but with your training, I think it may be obvious that I still have the effects to a degree), she established the norm by measuring the left side muscles, then tested the right side. She also sent a shock to the whole left side, then the right with what can only be called- forgive me, Sangye, for bringing this up, considering where the rabbit thing on this site has evolved- a small cattle prod, Actually, the cattle prod thing must have come first. That makes more sense. She established a percentage healing (and if nerves were reconnecting to the correct muscles), then used drugs for the pain, I can't say if she also does the other thing.

Sangye
04-13-2009, 04:55 AM
Oh, that's a diagnostic study. I thought you were referring to a therapeutic modality before. The test you had is highly unpleasant. It sends electric current through a nerve and measures the output at the end, to see if the whole nerve is connected and functioning optimally. Dreadful, but very useful.

Doug
04-13-2009, 05:18 AM
The physiatrist I went to caused me very little discomfort, considering she was testing nerves on my face. Of course, I had been in such screaming pain up till that time that maybe it seemed triffling by comparison!

Sangye
04-13-2009, 09:12 AM
Of course, I had been in such screaming pain up till that time that maybe it seemed triffling by comparison!

I think that was the case. Testing nerves on your face-- sheesh. You're one tough feller, Doug.

ian anderson
05-20-2010, 08:57 AM
hi mike hope your doin good you asked if this wg affects healthy people read my story it sure does we,ll speak agn im sure take care