Omg...i Might Be On To Something

[dlp252]

There were months and months where nothing I did seemed to make much difference and that made it difficult to have confidence in what I was doing but now I realize that when you get really ill it takes time to recover.

Yes, this is hard to remember but key I think!

Now I feel like I just better try it before I move. I belong in San Jose. Well, maybe Portland.

Either way I need out before the stretches of 115 degrees begin.

(What's a word beyond heinous?)

uberheinous? megaheinous? Death?!

P.S. Reminded of some lyrics hehe

"I was a poor magician

I could never understand

You can't make tears

disappear through sleight of hand"

timbuk3

Ah yes, but a chocolate bumble bar with peanut butter can sure help.

[AndreaB]

Today was a really good day ( though I am awake in the middle of the night that is in part because I fell asleep at nine) I cleaned thoroughly, put away a ton of stuff, rehung pictures and generally made our little house into a pleasant space to be in. I've been laying on the couch looking at a disaster zone for the past week.

Yay for a good day. Sounds like you got a lot of stuff done.

I'm so glad you are feeling better.

Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred.

I'm sorry about the relapse. Did you ever look into the celiac disease-57 test? I doubt you can do it from China though, but who knows.

Ah! Cute girls.

Yes they are cute. I think I dingo'd commenting on that.

Donna, yay for sleeping til the alarm went off.

Ah yes, but a chocolate bumble bar with peanut butter can sure help.

Tom,

If you don't mind cooler weather and lots of rain Portland would be good.

You've spent a lot of time in San Jose so that would be good too.

I'm a lot of help aren't I?

[tom]

Hi everyone,

I'm very interested whether anyone has any experience/insight into what I call the "Algernon Effect".

I made reference to it in a post on the sillythread then felt the need to expand. And it's way too serious for over there even tho I DID sneak a couple jokes in.

I *thought* I was going to try to explain A.E. in a short post. (No, seriously!! )

The dreaded Algernon Effect.

I've been meaning to post about it but what I wrote got so off-track & extremely lengthy I didn't want to post it.

Short version is that it refers to the book "Flowers for Algernon" and the resulting movie "Charly".

A mouse and a man receive a drug that "cures" all their brain problems and even makes them brilliant. (Mouse 1st)

But then it's found to be temporary and Charly will soon again be retarded (if not dead).

[/beginlongversion]

I've, far more times than I'd like to stop & count, had drastic improvements from some certain stimuli or elimination, to the point that overwhelming, unparalled glee (sometimes accompanied by TEARS of joy) comes from the "omg it's actually truly FINALLY OVER!!!!!!!!" thought.

So to me the Algernon Effect is in the finding that it was all-too-temporary, fleeting as a dream just woken from, and you're once again mired in the same god-damned despicable situation you'd been so ecstatic to have left behind.

And further saddened and downright heinously (to steal another's vocab) angry at barely having time to savor the teasing taste of life as it should be!!

<requesting permission to continue diatribe>

<"thank u sir! may i have another! (paragraph, that is)>

Unfortunately I've been thru it so many times that even *years* ago my brain began to compensate (it's SOOOO crushing to the psyche) - not allowing any flashes of "omg it's finally over" to take root, sweeping them away like the unwanted, invading sand in a beach-side cottage's threshold.

There.

I said it.

W/ my newly whirring brain, the algernon effect scares the sh!t outta me.

The sand is thru the door and in the rugs.

(Oh plz, as if anyone believed *I* had a "short version" !! )

[tom]

Tom,

If you don't mind cooler weather and lots of rain Portland would be good.

You've spent a lot of time in San Jose so that would be good too.

I'm a lot of help aren't I?

Hehehe LOL Andrea

Any and all replies are appreciated.

It's gotta be 80-90% SJ but so far the guys I'd get a house w/ can't until maybe late Aug. So I'd prob then want a few weeks in Portland (w/ sister) instead of Phx in Aug.

I've been to Portland enough to know the gloom. Summer has many good days tho.

Of course, it's all dependent on keeping algernon away. <shudder>

[rinne]

.....

OH who mentioned FLAN now thats a desert I could get down with!!! I spent a summer in puerto rico when i was younger and my friends grandmother would always make us fresh caramel flan. YUM!!!!

If you can use coconut milk, not the light , and you can eat eggs you can make a wonderful flan with it.

Re: Frico

LOL I don't know why this suddenly came to me, but Rinne, I just had to find this post so I could say:

PARCHMENT PAPER??!!! Wow u really are a real chef!! (Just reading it in the sig is never enough to convince a doubting tom)

....

I tend to think cook rather than chef ( chefs get paid real money) and yes I love to cook and bake. I've spent years in kitchens feeding people and have always enjoyed it.

I've always received lots of positive feedback for my cooking and so when I could no longer use almost all the ingredients I had used I also lost that part of my life for a time. I joke that I created them out of desperation for compliments.

Truthfully though, I created what we call the rinne bars out of desire for a treat that I could have.

It was after making them I realized that they weren't just a passable gluten and dairy free treat but that they were seriously delicious and that my friends were raving once again.

I've been working through just how to bring them to market given that as well as I feel now, I know that major stress could set me back. There are kitchen facilities I am planning on renting by the day that will allow me to do this without investing in a commercial kitchen.

I am thinking that they will be in the local market this summer but on a small scale. I'm hoping the marketing guy can help take them to another level of production.

What I would like to be doing is creating new gluten and dairy free products and have someone else take on production. I'm working on something like an icecream sandwich with a gluten, dairy and grain free brownie crust and I have a lemon pound cake recipe that has a lot of potential.

....

I have always been able to drink juice I make myself, but NOT already made juice. They don't exactly use the pretty fruit for juice. This is what bothers me with peanut butter, too. I can take a little of it, but not two or three days in a row. Of course, right now, I don't take either .... but a little fruit juice from Wild Oats once in a while ...

.....

Sorry you didn't get the kitchen you were hoping for but perhaps it will work out in another way.

I think you make a good point about the juice, even the juice we think should be good for us might not be. The bad carrot juice last winter left one woman paralyzed and another dead here in Canada.

Mold, just a reminder that the Valencia peanuts are not subject to the same mold problems other peanuts have.

....

"I was a poor magician

I could never understand

You can't make tears

disappear through sleight of hand"

timbuk3

Lovely.

[AndreaB]

It's gotta be 80-90% SJ but so far the guys I'd get a house w/ can't until maybe late Aug. So I'd prob then want a few weeks in Portland (w/ sister) instead of Phx in Aug.

I've been to Portland enough to know the gloom. Summer has many good days tho.

Of course, it's all dependent on keeping algernon away. <shudder>

Well we are 1/2 hour into Washington so if you come up to Portland and want to meet my crew you'll have to let me know.

I do hope the algernon stays away for you too.

Doesn't monsoon season start in July? Does Phoenix get hotter than Tucson?

[dlp252]

I'm very interested whether anyone has any experience/insight into what I call the "Algernon Effect".

So, is Charly the mouse or the human?

Seriously though...I think I know what you mean. I think many of us have had our hopes up only to be let down...doesn't necessarily only apply to health, but that's certainly what we're all dealing with the most here lately.

I'm taking it one day at a time...I'm currently celebrating that I have a bunch more energy today than I had even a few weeks ago!

Any and all replies are appreciated.

It's gotta be 80-90% SJ but so far the guys I'd get a house w/ can't until maybe late Aug. So I'd prob then want a few weeks in Portland (w/ sister) instead of Phx in Aug.

I've been to Portland enough to know the gloom. Summer has many good days tho.

Of course, it's all dependent on keeping algernon away. <shudder>

And what pray tell does the algernon effect have to do with it? Because you wouldn't be well enough? I'm so sad for all of us who have had to put off doing what we want because of our health!

Well, it ain't no 115 here, but it's been dang hot here the last few days.

[tom]

Well we are 1/2 hour into Washington so if you come up to Portland and want to meet my crew you'll have to let me know.

Well doesn't THAT thought bring a smile to this soy-free & hopeful face!

I do hope the algernon stays away for you too.

Thx!!!!

Doesn't monsoon season start in July? Does Phoenix get hotter than Tucson?

The monsoons here sure aren't what they used to be. Even an article in paper recently discussing the reasons. I only read headline tho - I'd read it if I were planning to stay.

Phx much hotter than Tucson. While T is further south (2/3 of the way to Mex from here), it's also 2000 or 3000 ft higher. (Dingo'd THAT stat!! )

There's even a ski area 45min from the U of Az!!

So Phx was I think just under 10 deg hotter in my college days, but w/ that 'urban heat island' effect it's become maybe up to 12-15 deg hotter on the hot days. Brutal.

It crosses my comfort threshold way more in Phx than Tucson. (~105 btw - like ~90 in humid east (see: Chicago))

[DingoGirl]

uberheinous? megaheinous? Death?!

Excellent work, Donna!

Um, Tom, yeah I"ve been through the "Algernon Affect" for over half my life. It was called.....bipolar disorder. Up and down....up and down.....until in the last few years, there were no ups....until Celiac dx. and now - - there are downs but they are few, MUCH farther between, and don't last nearly as long......

Hallooooooooooo everyone! Just the quickest hi - - gotta run.

[Rachel--24]

I think they know they are losing control of what has been a monopoly for them.

Definately....and I think Autism is gonna be a huge player in this.

I really believe that it will be the alternative Dr.'s who make breakthroughs with this disease. Its already happening....remarkable turn-arounds following supplementation, detox, chelation, treatment for infections, etc.

Western medicine really has nothing to offer in the way of a "cure".....nothing to really treat this disease.

Lyme Disease, mercury toxicity, autism.....these are all very controversial conditions and it will only get worse with time because the treatments required are not only conventional.

The more toxic the world becomes the greater impact things like mercury and Lyme have on our health. More and more people are eventually gonna turn to alternative or integrative medicine in the same way they are now starting to move towards organic foods.

Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred. Took about 4-5 months completely off treatment to start coming back. Started gradually about a month ago with fleeting pains in extremities and joints, increased to morning stiffness, then to all day stiffness and significant pain.

Awwwww...I'm really sorry to hear this.

Why did you go off of treatment? Was it because of reduction in symtpoms??

If you can....try to get a cd57 test.

Its very common that following antibiotic treatment people are relapsing back into Lyme. In these cases the immune system isnt actually strong enough to fight the infection on its own so the symptoms gradually return.

A CD57 can actually tell you how well your immune system is coping with the disease. You may be symptom free but still have a low count of CD57 cells and thus not ready to stop treatment.

The CD57 cells are only known to be suppressed by Lyme.....they are natural killer cells...the lower the count...the more of a hold the infection has on you. Alot of LLMD's will not stop treatment until the CD57 cell count is high enough....indicating the immune system has a hold over the Lyme and relapse is less likely to occur.

CD57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or celiac disease-4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD57 cells that are known only to be suppressed in the presence of Lyme disease.

Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease. Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200.

It is my opinion that treatment is necessary until the CD57 test score is 150 or above. The lower the result, the more likely a relapse if treatment is terminated.

The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels. For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

Also since you are still mercury toxic and having problems in other areas...food intolerance, etc...you should definately continue Lyme treatment until all of the co-existing factors are dealt with...including any possible co-infections.

Unfortunately these are not all seperate issues....they co-exist in the body together and you wont be able to hold the Lyme back until you're free of the mercury burden.....and any other burdens you may have. They will all contribute to the relapse of your Lyme infection.

I dont think the relapse had anything to do with going gluten-free....more than likely its a coincidence in timing. I do think the mercury toxicity/candida burden has alot more to do with it.

Yeah....ecoffee

I think that works quite well here.

[tom]

I am thinking that they will be in the local market this summer but on a small scale.

THAT will be SO cool!!!

If not this summer, I get the feeling it's no more than a delay. You GO girl!!!

[CarlaB]

Hi, sorry I can't really keep up reading the posts on this thread...but wanted to let you know that my lyme has recurred. Took about 4-5 months completely off treatment to start coming back.

I'm so sorry. Were your symptoms completely gone when you went off abx before? How long were they gone?

OH who mentioned FLAN now thats a desert I could get down with!!! I spent a summer in puerto rico when i was younger and my friends grandmother would always make us fresh caramel flan. YUM!!!!

That would be me! I don't understand WHY the servings are so small!

Re: <big breath> twoallbeefpattiesspecialsaucelettucecheesepicklesonionsonasesameseedbun!!

You got it right!

I remember the commercials, but not the promo. I don't think I cared back then whether me Big Mac was free or not ... it was free to me anyway! That was the manager's point ... most people THINK they remember, but they don't.

[dlp252]

Excellent work, Donna!

Well I thought first of odious, but I'm not sure that's any more heinous than heinous is.

[AndreaB]

It crosses my comfort threshold way more in Phx than Tucson. (~105 btw - like ~90 in humid east (see: Chicago))

Washington is pretty humid too. We die when it's in the upper 80's/lower 90's.

My dad loved Tucson. He lived there for 8-10 years.....I forget.

It'll be good to see you if you make it up to Portland. Somehow I don't think my crew is a sweet as the ones in your avatar though. Hubby can only be counted to be seen on the weekends as his work hours are very sporadic. He works 60-70 hour weeks (M-F)

Hallooooooooooo everyone! Just the quickest hi - - gotta run.

Just a teaser today huh......Well it's good to see you anyway.

[Rachel--24]

I also miss my grandmas mexican hot chocolate and rice pudding.

I've only had mexican hot chocolate a couple times. The have it at Xmas In The Park (San Jose) every year. Its so funny that you brought it up because I was actually thinking about it last night.

Used a warm water enyma tonight. Got some pebbles out of there but not much. But some I guess is better than none. For some reason the water feels so much hotter in your colon than your hand.

I usually do the enema twice. Are you using enough water...and are you holding it in for a long enough time. I usually massage my stomach and it seems to help loosen stuff up.

Also when my Dr. was discussing ecoffees ( ) with me....she said to always make sure you are not rushing things. Some people sit there a couple minutes and think they're done and thats it....she said to sit at least 15 minutes.

I told her I had already realized this....if I'm patient things will start happenning...sometimes 10 minutes later.

Hey rachel do you think it's ok for me to do coffee enymas? And do you do them everyday or a few times a week? And can you do them everyday?

I wouldnt do them everyday right now....I think that would be way too much for you to handle. My Dr. wants me to do 3 per week.

I think if you try it you should use a smaller amount of coffee then whats recommended...my Dr. said to start with only a couple teaspoons. You also should not prepare it in a teflon or aluminum pot....this will make you more toxic. Coffee needs to be caffienated and organic.

Its the caffeine that stimulates the liver....decaf wont work.

OH who mentioned FLAN now thats a desert I could get down with!!! I spent a summer in puerto rico when i was younger and my friends grandmother would always make us fresh caramel flan. YUM!!!!

Yummy flan.

I only have a couple minutes to post ... I'm not caught up.

I have always been able to drink juice I make myself, but NOT already made juice. They don't exactly use the pretty fruit for juice.

Yeah....they use the "less than desireable" fruit to make fruit juice....the stuff they wouldnt be able to sell in a store. Its usually overripe...bruised....full of fungus and molds.

[rinne]

...

uberheinous? ...

I like the way it sounds, got my vote.

...

Yes they are cute. I think I dingo'd commenting on that.

....

Thanks for the reminder Andrea, I keep dingoing it myself . They are very cute girls, wonderful how life gives life isn't it?

As for the Algernon effect, seen the movie and cried, yes I get what you mean.

I think Susan has a point, particularly if they are ecstatic periods followed by crashes but life also is just like that, maturing I think.

If we are inclined toward maturity, as in we are seeking to wake up, then I think life often has this pattern and that it is natural that there are hills and valleys.

It seems also that you are familiar with tragedy and my feeling is that each tragedy requires a complete refinding on oneself in the world, if that makes sense.

Studies have been done that show that in communities where death comes too often there is a point at which people can't absorb more suffering and the community breaks down. It is like living in a war zone.

I seem to have an affection for emptiness and then for something new to arise from that.

I never expected this life.

And hey, you are going to have to write more if you want to be apologizing for it .

THAT will be SO cool!!!

If not this summer, I get the feeling it's no more than a delay. You GO girl!!!

Thanks, yes, all part of this new life.

...

I remember the commercials, but not the promo. I don't think I cared back then whether me Big Mac was free or not ... it was free to me anyway! That was the manager's point ... most people THINK they remember, but they don't.

[tom]

Um, Tom, yeah I"ve been through the "Algernon Effect" for over half my life. It was called.....bipolar disorder. Up and down....up and down.....until in the last few years, there were no ups....until Celiac dx. and now - - there are downs but they are few, MUCH farther between, and don't last nearly as long......

Hallooooooooooo everyone! Just the quickest hi - - gotta run.

That WAS a quick pop-thru!!

Bet no time to read my tribute to the Nuggets w/ Almonds.

(Huge LOL at the read-back find of u keeping the bag at brother's house btw )

Ok then Pseu-zun - while admitting limited knowledge of BP, the ups&downs are gonna happen while zero treatment is attempted, right? (I guess that's rhetorical, since it sounds like part of the definition)

Hey! I thought YOU actually *read* "Flowers for Algernon" !!!!!!

And believe me, "I wouldn't give your troubles to (hehe I know you're ahead of me here) a monkey on a ROCK!!" LOL

Also, I'm very sympathetic to all you've been through. Feels like we compacted 2-3mos of normal 'getting to know each other' into 3 finger-fatigueing days.

So that being said, there's a critical distinction to the A.E. in that, just like in the book/movie, the complete removal of symptoms is 100% caused by actions expressly intended to 'cure' the problem.

And the absence of symptoms is believed to be permanent. Done. Fixed. Mission accomplished AND fait accompli.

The Algernon Effect is meant to convey a pretty distinct set of circumstances.

Now I've got to add I *would* actually bet you HAVE been thru exactly what I'm describing. My 1st times were all from SSRIs for depression.

<phew! trying to choose words so carefully> :) :) :)

P.S. Listening to Dianne Reeves now - wow! Anyone familiar? Maybe from that Clooney movie about Edward R. Murrow?

Uhhhhh ummmmmmm "Good Night and Good Luck"!!

YES!

[CarlaB]

I'm confused about using ABX and nutraceticals such as cat's claw at the same time, is this a common practice?

I'm on many herbs and supplements. I think many LLMD's are well-versed in herbal protocols (mine is) and use what will work best.

I'm very interested whether anyone has any experience/insight into what I call the "Algernon Effect".

I felt much, much better when I went gluten-free. It was the best I had felt in a long time.

Then I started going downhill again, and by the end of last summer, I wasn't very functional and couldn't even walk around the block.

By December I was laying down or in bed most of the time. That is when I tested positive for Lyme Disease.

I think getting off the gluten initially took enough of the toxic load off that I felt I recovered, but the problem all along was the Lyme, so in the end, I felt worse than I felt before I went gluten-free.

I think that when a person finds the "real" problem, that is when we really get better, other stuff is only a help along the way.

(Oh plz, as if anyone believed *I* had a "short version" !! )

I could believe you could have a short version ... it would be Rachel that wouldn't have a short version!

Sorry you didn't get the kitchen you were hoping for but perhaps it will work out in another way.

Yes, if the house doesn't go up for sale, we'll have to make one of the rooms in the house a temporary kitchen ... with a hot plate, microwave , toaster oven, and refrigerator. No sink though. Hopefully, we'll still get the house across the street.

[tom]

The have it at Xmas In The Park (San Jose) every year.

Whoa!!! Xmas in The Park!!!

That park (Plaza de Cesar Chavez) is as well-used an urban space as any could be!!

Have u done the Xmas part since the moved the skating rink to in front of the Art Museum? (FYI to non-californians: it's nowhere near cold enough for an ice rink but w/ liquid nitrogen-filled tubes under the ice it's awesome!!)

And the nearly-summer-long Thurs Music in the Park series has always been a blast. I went years w/out missing one b4 getting sick.

Ahhhhhh The Park. (Thx Rachel)

[AndreaB]

I could believe you could have a short version ... it would be Rachel that wouldn't have a short version!

How true! Jin is pretty good with those long ones too though.

[dlp252]

Hey, our choir sings (and actually my small group has too) at Christmas in the Park!

[tom]

As for the Algernon effect, seen the movie and cried, yes I get what you mean.

It is a tearjerker. Award-winning.

Everyone here has seen only how I can be at my best. Just last month, half the time I'd barely get thru the conversation one has for a minute w/ the cashier, in that previously (for me) awkward forced miniscule piece of interaction.

Yesterday I may have been the most fun customer of their shift at the bank, trader joe's AND whole foods.

I'm not trying to make a competition out of this, just highlighting why the algernon effect is, right now, today, scaring me.

The last time I could think like this was in '05. Will I soon lose it again until '09?

Someone asked who's who. Charly is the guy & Algernon's mousy.

Open Original Shared Link

[tabasco32]

It is a gluten and dairy free frozen dessert which resembles a Hagan Daas ice cream bar. I invented it.

What you mean you invented it? Does it have chocolate on the outside and nuts or toffee pieces?

[dlp252]

Someone asked who's who. Charly is the guy & Algernon's mousy.

Open Original Shared Link

Thanks, I'd never heard of this movie before.

[TheRockShow182]

I'm just discovering that I'm gluten intolerance and yesterday I made some corn tortillas out of whole corn (ingredients: corn, salt, lime) and I seem to be swollen today (edema is the major side effect/reaction I get when I've been glutened). I'm not sure if it's just corn in the more pure forms which I cannot handle or if it's corn additives, i.e. corn starch, syrup etc..

Have you or anyone else found a way to test a way for corn intolerance other than trial and error. Please let me know, as I think we may be in the same boat. I hope you're feeling better though