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» LymeNet Flash » Questions and Discussion » Medical Questions » NEW questions end of page 2; parkinson's neurologist told me i can not question him!

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Author Topic: NEW questions end of page 2; parkinson's neurologist told me i can not question him!
bettyg
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i went to a parkinson's educational program at hospital; one of evening learning classes they give.

hubby has parkinsons and i'm positive it's secondary to UNDIAGNOSED LYME.


came time for Q/A, and i stated the following:


you forgot to mention 1 other thing of possibilities: chronic lyme disease.


my hubby has rolling hand tremors and freezing up in parkinson's and i feel it's secondary due to undiagnosed lyme disease.


i had him tested when i was diaganosed w/chronic lyme at igenex blood lab in calif. when we got the results, the dr. didn't know how to read the numbers/meaning, so he's gone undiagnosed.


DO YOU TEST FOR LYME DISEASE by western blot igm/igg?? later on...NO REPLY FROM HIM!


think i stopped there; may have thrown something else in.


so dr. says, the question is can lyme disease be parkinsons?


NO! in iowa's it's very RARE to have lyme disease according to cdc. it's mainly up north...minn/wisc. and east coast.


we test by spinal fluid testing and ..... of central nervous system. i can't remember what he said.

then he added other jibberish of WRONG statistics and calling it LYMES disease. he finished and started going to next person. i shook my head in disbelief.


i said, MAY I FOLLOWUP PLEASE ?


NO YOU CAN NOT! next question ...there.
********************************


so i packed up and left. shall i say i was angry with this DUCK? you betcha!


if you hear this HOG WASH; wouldn't you have spoken up to correct some facts.


i was going to say iowa as no. 15 nationwide!


edited: corrected some misspellings and adding a few more thoughts i'd forgotten last night.


room had been 50-70 folks; so many folks there but the coordinator of program did NOT have the normal microphone to go from 1 person to another so all in room could here.


dr. did state if meds helped with tremors, freezing up, hullucinations, etc.... patient has PARKINGSON'S.


if meds don't help w/tremors, etc. and patient STILL HAS ... they do NOT HAVE PARKINSON'S but a "parkinson's LIKE disease".


so what is a parkinson's like disease?

another woman made a statement earlier she had been dx w/PD, put on meds, etc. i couldn't hear all of her comments but got better, and then relapsed.


he informed her she NEVER had parkinson's too ... it was parkinson's like disease!


never dreamt this post would bring 50 replies to date/time when i'm adding this! and all over "duck" being used once! [tsk]

[ 09. November 2008, 01:30 AM: Message edited by: bettyg ]

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luvs2ride
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betty

This has got to be the most frustrating disease. Good for you for speaking up.

I'm sorry for your husband. I hope you can find the right help for you both real soon.

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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Peacesoul
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You've classified a person as a DUCK because he would not answer your question?

Do you know his background? Do you know how many lives he's saved or if he works for other causes that have helped other illnesses?

Just curious why you would label him a "duck"

Please elaborate

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seekhelp
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Though I don't have much respect for doctors unwilling to contemplate alternative possibilities, the use of the word "DUCK" on this forum is so childish.

Any outsider would think we're 5 years old. There has to be more articulate ways to express dissatisfaction with specific medical providers.

We want Lyme to be accepted and understood, but we communicate on that level? C'mon!

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Lymetoo
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I had him tested when i was diagned w/chronic lyme at igenex blood lab in calif. when we got the results, the dr. didn't know how to read the numbers/meaning, so he's gone undiagnosed.


Can you post his results here??

That "doctor" is afraid of the truth. It would hurt his business and he was protecting himself, not your husband.

My father had Parkinson's .. secondary to Lyme, I'm sure.

--------------------
--Lymetutu--
Opinions, not medical advice!

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adamm
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I too seriously question how many of these doctor are actually

misinformed and how many deny the existence of the

disease because they'd lose their clientele/jobs if they acknowledged it.

Was his reaction to your question really as violent as you make it seem by capitalizing it? [Eek!]

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Peacesoul
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quote:
Originally posted by seekhelp:
Though I don't have much respect for doctors unwilling to contemplate alternative possibilities, the use of the word "DUCK" on this forum is so childish.

Any outsider would think we're 5 years old. There has to be more articulate ways to express dissatisfaction with specific medical providers.

We want Lyme to be accepted and understood, but we communicate on that level? C'mon!

agreed and I've been saying that for a while now on this site.

It's the same people who use that term over and over.

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Peacesoul
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Dizzy, I was not addressing you

So what. Dr's don't want to listen to lyme patients and they don't have the time and yes some dr's have horrible personalities, so because of this, you need to lash out and call them names?

I was in the ER a month ago and the dr said I "looked fine" and refused to examine me.
I have lupus and lyme and walked in with severe chest pains.
I've been to an ER a total of 3 times my whole life. I'm not a complainer but this dr was a total jerk.

Whatever...I wasn't going to waste my time or energy on him. I walked out! The end.

I didn't go on and on about "look at me, I'm a victim and no dr wants to listen to me"

Getting dr's to listen takes self resepct and grace. Calling dr's ducks shows such little class

and Betty, I am sorry about your hubby, but who cares if he didn't want to answer your questions.
Find someone who wants to listen to you.

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jamieL
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I don't think Betty showed any less class or maturity by calling this man a "duck" than he did when he dismissed her concerns and publicly humiliated her.

I cannot imagine why anyone would take up for this doctor...

--------------------
Diagnosed with :yme and mycoplasma pneumonia Aug 08.
Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber

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METALLlC BLUE
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Getting back on topic, I can understand your frustration Betty. I can tell you exactly what I say to doctors now who say such things:

"Just because facts can be used to obscure the truth, doesn't make my argument any less pragmatic, with hundreds of studies addressing persistent infection, and so little being known about Parkinson's Disease and the controversy surrounding it's connection to Late Stage Neurological Lyme Disease, it would be wise to investigate such possibilities before dismissing them, the alternative is diagnosing a human being with a disease with an unknown etiology and inevitable death being the conclusion.

I highly implore you to consider reason over dogma."

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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GraceT
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To PeaceSoul,

The Pioneers who have been sharing on LymeNet and have so much experience to share are helping Newbies so much.

You might be a Pioneer, however, I've just taken you OFF my list of people that I will listen to or respect on this post. You are offensive to read and show little compassion in how you express yourself.

Grace

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Wimenin
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If it walks like a duck, sounds like a duck, acts like a duck...Id call it a duck.

But perhaps its more a case of ego and lack of knowledge. Ive talked to countless drs and nurses and aside from the llmd staff, almost all the other medical people are woefully uninformed, and have predisposed notions of lyme patients.

Most neuros dont believe in lyme and would rather talk of fybro, lupus, ms, parkinsons, migraines, bi polar, arthritis, then designate lyme. Even when I person has not only clinical diagnosis, but serologicial as well, those same drs will still say that a person only has it for a few weeks, and everything else is post lyme syndrome, anxiety, an inflammatory response, or briquettes syndrome.

As for no lyme in iowa, thats absurd.

For me personally, I swear at times Im a tick magnet. I can walk a vacant lot, and lo and behold, Ill find a tick on me. In the past I wasnt looking for them, but now, I check myself over everynight, and especially when I walk in the fields.

My advice, learn to seperate those that know from those that dont. Its not worth the aggrevation when dealing with people who dont know, and worse yet, dont care.

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disturbedme
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quote:
I don't think Betty showed any less class or maturity by calling this man a "duck" than he did when he dismissed her concerns and publicly humiliated her.

I cannot imagine why anyone would take up for this doctor...

I couldn't agree more. Plain and simple. Well said, jamieL.

To Betty: It doesn't surprise me that he didn't want to listen or take you seriously. Unfortunately, it just never ends... Most doctors don't like hearing anyone speak except themselves. [cussing]

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

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tickssuck
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Hi Betty,

I am so sorry you were treated so disrespectfully by this doctor. I just pray, over time, more doctors will become both aware and educated about this disease. TS

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lymielauren28
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You know I just have to stick my two cents in!
Betty I'm sorry that you had to waste your time trying to talk some truth and sense into somebody with the brains of a tadpole.

No matter how many times we are invalidated by these doctors we never quite get used to it do we? It still stings, and it always will.

For Peacesoul and Seekhelp...be glad that it wasn't my thread because I can think of much more inappropriate and degrading names to call these idiots walking around strutting their medical licenses.

Even "rhinoceras $#$!" doesn't do it!! And who gives a donkey's behind if they do come on here and hear us calling them Ducks?!
Oh no! What would happen then? They might feel some of the anger and humiliation we've felt when they labeled us "hypochondriacs" and "depressed" and "anxious"! Who cares?!

I sure don't! If that makes me childish, immature and anything less than classy then so be it!

Lauren

--------------------
"The only way out is through"

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seekhelp
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I'm dropping the topic because yes we all do havw freedom of speech. I can say anything I want to anyone at anytime and accept the consequences. I appreciate that right.

I don't want to fight. I want to get better. My point was two wrongs never make a right. His ignorance and rudeness towards BettyG and her husband is wrong.

Likewise, the way one acts towards another is also important. There's been SO SO many times I'd want to reach across the table in the doctor's office and say mean stuff. I do express my opinion, but it's in the manner of not giving them my business and doing everything in my power to give negative referrals.

If it was bad enough as some have been medically abused, I'd be happy to take it to the media / court. I have heard several sad stories on here that are sickening and the doctor / hospital deserves to be prosecuted.

While I never can be sure, I suspect I've had Lyme undiagnosed now since 1997. You don't think I despise doctors for losing these important years of my life?

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imanurse
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Betty,

Sorry this physician was rude. I have a feeling this is MG hospital and we've both been to lectures there before where there was an IDSA fellow lecturing about Lyme disease, or at least he tried, but had very limited knowledge.

I would like to take advantage of this situation and educate him about the similarities of some Lyme disease cases and Parkinson's. I have a file of literature about Lyme and Parkinsonism and I would like to send this to him with a personal letter and Iowa statistics from Public Health.

You tried, and maybe planted a small seed in the back of the minds of other attendees. If you want me to follow up you know how to reach me.

--------------------
**Eat Chocolate**

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bettyg
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tutu,

just getting online today. i will find hubby's igm/igg and post as time permits and weather permitting.


starting to rain again; had horrible lightning for 4 hrs. last night, and SNOW expected late tonight! saw black hills getting 16" ... uffda


i have probably used the word duck 5-10 times most! so i'm NOT the person using this over and over ... totally wrong.


adam, i wished you could have heard his STERN voice when he said, NO, YOU CAN NOT! his body actions were just as evident.


thank you to those who came on here for words of comfort, COMPASSION, and understanding. [group hug] [kiss]


to others nitpicking on word usage, get a life. peacesoul, you called your dr. a JERK; same disrespect....end of story.


yes, i'd like to find useful info to help my hubby too; he's gone really downhill fast this year.


tutu, the dr. reading the igm/igg was NOT our pcp who diagnosed me correctly. this dr. was the 1st BEGINNING llmd i went to locally. he was just being training by lyme PATIENTS!


you know the more i think of it, i'm sure i've posted this before. so i/you should be able to click on search,

western blot igm/igg
medical
subject
any date
my no. of 6147 hit enter/search

should bring it up.

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wiserforit
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Helloooo Bettyg, my friend,

I'm so sorry to learn of your hubbies struggles. Three cheers for you for trying to keep learning about Lyme and Parkinsons and how they might dovetail in a differential diagnosis.

I think you did the right thing by walking out. We have all had the experience with abrupt MDs of being told our interest to learn more is a crazy fascination rather than intelligence.

The doc can't change his feathers by thinking outside the box of his specialty muchless adding to it. Thus, the term "DUCK" is born... and into the Alligator Pit he goes.

BUT if you think he has any wisdom that you can gain from, write him a letter with your questions. Explain that he cut you off at the lecture and outline things in an intelligent manner.

Then, mail the letter and don't count on hearing from him. BUT...it will be serendipity if his conscience rings enough to reply.

He isn't worth the expenditure of energy that you need in reserve for healing. Maybe he's helped people within the realm of his specialty, but from a Lyme perspective.... Release him to the pit!! Better yet, Rockette him into the pit!

Glug, glug, chomp! [Big Grin]

hugs,

wiserforit

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bettyg
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i used search and found this!

update;
tutu/others, i dug out the igm/igg before i got on internet!

IGM shown NEGATIVE 9-3-04

28 +
30 +/-
31 +/-
34 +/-
39 +/-
41 +
45 +/-
58 +
66 +/-

totals 3+, 6 +/-


IGM - EQUIVOCAL 9-3-04

28 +/-
39 +
41 +/-
58 +/-
66 +/-

totals = 1+, 4 +/-

after looking at dr c's explanation; looks like lyme alright!


tori, thank you for your comments! [group hug] [kiss]

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Tincup
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Betty G..

You did good, AS USUAL... especially against such bad odds too!

You need any help educating the ducks... just let me know.

I'm here huckleberry.

I agree with Wiemen, who said...

"If it walks like a duck, sounds like a duck, acts like a duck...Id call it a duck."

The reason I call them ducks....

1. Because they are.

2. Because if I said what I really think of these sylmes... I'd have have to wash my own mouth out with soap.

And again... anyone who doesn't think it is polite to call them ducks...

Feel free to join me as I kneel at the grave side of those dear family members and friends, who SHOULD be alive today had it not been for these IDIOT DUCKS.

Or if you don't want to soil your britches kneeling down in prayer with me.... try spending the rest of your life caring for the children who are so sick and disabled because their ducks wouldn't listen.

Ticks don't kill, they are only doing what they need to survive.

Lyme disease doesn't kill.. it is treatable.

It is the IDIOT ducks that won't educate themselves and use their heads for more than a hat rack that kill us by being STUPID, UNCARING and NOT LISTENING.

AND CHARGING US MONEY TO KILL US!!!!

And NO.. I am not the University of Tincup. I do not get a student loan check each month for running around educating doctors. THEY need to educate themselves if they want to control people's lives with the power of a prescription pad.

They need to stop thinking they are God's and that others aren't able to THINK. They need to put PEOPLE before their pocket books and get a %^*(*^&%#@#U grip!

QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK, QUACK!







[rant]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Marnie
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Parkinson's and G coupled protein receptors:

http://www.sciencedaily.com/releases/2008/10/081006102607.htm

In that link...pay VERY CLOSE ATTENTION to ``G coupled protein receptors''!!!

Repeating:

The opsin of amphioxus (lizard) rhodopsin can also bind 11-cis-retinal to form a photoreceptive pigment that can convert to a red-shifted photoproduct through cis-trans isomerization of the chromophore

***upon photon absorption***.

The red-shifted photoproduct is

the stable G protein

activating state.

Incubation of the opsin with all-trans-retinal produces a G protein activating state that is spectroscopically and biochemically indistinguishable from the red-shifted photoproduct, indicating that the opsin possesses agonist-binding ability.

Bb has a PKC (delta, I think) inhibitor. That is protein kinase C, delta form. A man-made PKCd inhibitor is rottlein. Kinases transfer phosphate. Bb's inhibits protein kinase C delta (a phosphate transfer isn't happening).

Try to follow:

The TRPM channels are the way calcium and magnesium go into and out of our cells. The TRPM7 channel also functions as a kinase (phosphate transfer). It appears TRPM7 allows Ca and Na to go in...and Mg out.

That maybe why at the outset of lyme...Mg levels drop "significantly".

The G protein looks to activate that channel.

"The TRPM7/ChaK1 channel has been characterized using electrophysiological techniques, and recent evidence suggests that it may play a key role in the

regulation of magnesium homeostasis.

The kinase is specific for ATP and cannot use GTP as a substrate. ChaK1-cat is insensitive to staurosporine (up to 0.1 mM) but can be inhibited by rottlerin."

Rottlerin is a man-made PKCd inhibitor! It appears Bb has this inhibitor too...which would mean Bb inhibits the kinase linked to the channel function of TRPM7.

Now...look at the things that can activate the TRPM7 channel:

TRPM7 Mg++ homeostasis

activated by **Gs** / cAMP / PKA


Remember ``Upon photon absorption''?

Far infrared triggers/induces HO-1 which is very very very beneficial.

P.S. The G proteins are also linked to insulin and

"``Inhibition of PKCd or Src by PP2, a Src kinase family inhibitor, reduced insulin-induced glucose uptake"

"Insulin signalling: putting the `G-' in protein-protein interactions"

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disturbedme
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Tincup - as always, you have the greatest things to say.

Couldn't agree with you more!!!!

--------------------
One can never consent to creep when one feels an impulse to soar.
~ Helen Keller

My Lyme Story

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Lymetoo
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 -

--------------------
--Lymetutu--
Opinions, not medical advice!

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AliG
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quote:
Originally posted by bettyg:

i went to a parkinson's educational program at hospital; one of evening learning classes they give.

hubby has parkinsons and i'm positive it's secondary to UNDIAGNOSED LYME.


came time for Q/A, and i stated the following:


you forgot to mention 1 other thing of possibilities: chronic lyme disease.


my hubby has rolling hand tremors and freezing up in parkinson's and i feel it's secondary due to undiagnoed lyme disease.


i had him tested when i was diagned w/chronic lyme at igenex blood lab in calif. when we got the results, the dr. didn't know how to read the numbers/meaning, so he's gone undiagnosed.


DO YOU TEST FOR LYME DISEASE by western blot igm/igg?? later on...NO REPLY FROM HIM!



Kudos Betty!

You got the possibility out there in a room full of people. I'll bet it was pretty embarrassing for him to be confronted with this and apparently not know the answers, hence his deflection!

He dismissed you because he knew he could get himself into trouble trying to talk about something he didn't realize could be a problem & therefore has remain uninformed about.

To those who would complain about the term "duck", it is much kinder than if replacing the "d" with an "f" and can still allow one to vent their frustration without being vulgar.

If we are concerned about being kind and polite, the proper thing to do when you have nothing supportive to add to a thread where someone is seeking support would be to SOB (scroll on by). You may want to add that to your Netiquette books.

All I can say Betty is that DUCK is obviously a BIG, FAT POOPIE-HEAD*!! [Razz] I am glad that you walked out on his dismissive rudeness and I hope that some others may think to question his knowledge as a result of his OBVIOUS deflection of your question!! [group hug] [kiss]


*I'm allowed to be immature at times, I have neurological Lyme and this is a support forum for people like me, who have been misdiagnosed and/or psychologically abused by uninformed physicians who lack compassion & basic human decency (aka-DUCKS)! [Razz]

Those who have not shared these experiences, might not understand how it feels but it would seem that they are truly in the minority.

Judge not, lest ye be judged...Walk a mile in my moccasins......Scroll On By. [hi]

Love ya Betty [kiss]

D O W N - W I T H - D U C K S !!!
They should all be PLUCKED! [Razz]

BTW- IMO, there is a difference between a non-LL physician and a duck. I do not disrespect a physician just because he or she lacks knowledge, if they do not lack compassion & are willing to learn. "Duck" to me reflects a closed-minded practitioner with a dismissive attitude and demeaning manor, one who PREFERS to remain ignorant.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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randibear
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well this redneck just had to jump in here.....betty you were absolutely RIGHT....and far more polite than i would have been....

i stopped going to my pcp "duck" because even tho i gave him the results of igenex and told him i was going to a llmd, he told me "there is no lyme in texas and you don't have it".....and there were other issues.....

they can call us names, put notes in their little medical records, deny us treatment, KILL US, and we can't call them exactl as we see it????? sorry, i don't think so....

if it walks like a duck....it's a duck....

betty was absolutely right in her response....we lymies don't have the time in our lives, cause we don't know how much time we have (sorry that's morbid, but it's the truth) to waste on jerks like this....

his response was rude and unprofessional......

i call it like i see it.....betty was right....and the term duck fits....

--------------------
do not look back when the only course is forward

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AliG
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PS- If the maturity of the posters here bothers you, perhaps you should go look for a more mature forum. This is so completely absurd and I can not believe that it is still being perpetuated.

Live & let live and worry about your own conduct. We don't need maturity police, we have moderators and the last I checked, it was not against forum rules to post below a certain maturity level.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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copying marnie's above link here to read and break up as necessary; thanks marnie!!

it's above my comprehension, but i'll TRY to understand it! [group hug] [kiss]


'Caffeine Receptor' Solved:

Structure Of Important Neurological Receptor Defined


ScienceDaily (Oct. 13, 2008) --


Scientists from The Scripps Research Institute have determined the structure of an adenosine receptor that plays a critical role in a number of important physiological processes including pain, breathing, and heart function.


The findings could lead to the development of a new class of therapeutics for treating numerous neurological disorders, including Parkinson's and Huntington disease.


------------------------
See also:
Health & Medicine
Human Biology
Cancer
Genes
Mind & Brain
Huntington's Disease
Parkinson's
Opium
Reference
Drug discovery
Taste bud
Sensory neuron
Antihistamine


The study was published on October 2, 2008, in Science Express, an advance, online publication of selected research papers from the journal Science.


"We are developing a robust platform for studying human G protein-coupled receptor structure and function," Raymond Stevens, a Scripps Research scientist and professor.


"This work lays a strong foundation for understanding drug-receptor interactions. We expect to continue our work and develop a deep understanding as to how drugs interact with the broader class.


The findings--and our future research--could one day lead to the development of a novel class of therapeutics with improved pharmaceutical properties."


The new study defined the structure of the human A2A adenosine receptor--sometimes referred to as the "caffeine receptor"--which falls in the larger family of G protein-coupled receptors (GPCR).


"Last year, we determined the structure of the β2-adrenergic G protein-coupled receptor with multiple ligands," said Stevens.


"The big question then was--is it going to be another 10 years until we get the next new receptor? The answer is 'no.'

It has taken less than a year to determine this new structure. Our expectation is that even more will come out in the next few years."


Because of the importance of GPCRs to health and medicine and previous lack of knowledge about their structure, the Stevens lab's 2007 research solved the structure of the β2-adrenergic G protein-coupled receptor and was selected as one of the top 10 breakthroughs of the year by Science magazine.


"The National Institutes of Health supports programs specifically designed to develop technology to elucidate the structures of membrane proteins such as G-protein coupled receptors, which are critical for almost all aspects of health and disease," said Jeremy M. Berg, director of the NIH's National Institute of General Medical Sciences.


"The recent successes with the new methods foreshadow exciting future advances in determining the structures of other medically important proteins."


In the new study, the Stevens laboratory worked with the IJzerman laboratory at the Leiden/Amsterdam Center for Drug Research in The Netherlands, to illuminate the A2A adenosine receptor.


This receptor is blocked by methylxanthines like caffeine, which prevents the binding of other naturally occurring ligands.


Interestingly, there is evidence that coffee drinkers have a LOWER risk of Parkinson's disease.


Because membrane proteins like adenosine receptors have been notoriously difficult to crystallize--a key step in determining the structure of a molecule through the technique of x-ray crystallography--
the scientists bound the A2A adenosine receptor to a high-affinity antagonist, ZM241385.


ZM241385, which had been developed as a potential drug to combat Parkinson's disease, stabilizes the receptor.


With the two molecules bound together, the scientists were able to obtain crystals of the complex, and determine its structure.

A Big Surprise

The crystallographic model of the A2A receptor bound to ZM241385 reveals features distinct from previously reported GPCR structures.

With over one thousand members, G protein-coupled receptors are one of the most diverse protein families in the human genome.

They transduce or convert extracellular stimuli into intracellular signals through a number of signaling pathways including neurotransmitters, light, hormones, lipids, and proteins.


Because of their diverse signaling pathways, approximately one third, and perhaps as many as half, of currently marketed drugs are designed to target these receptors.


Extracellular adenosine plays an important role in physiology and initiates most of its effects through the activation of four GPCR subtypes, A1, A2A, A2B, and A3.


Each of these four receptors plays an essential role in responding to adenosine in the central nervous system in pain regulation, cerebral blood flow, basal ganglia functions, respiration, and sleep.


In the new study, the A2A adenosine-ligand bound structure suggests that there is no general receptor binding pocket conserved across the adenosine receptor family.

Rather, the pocket itself can vary in position and orientation, yielding more opportunity for receptor diversity and ligand selectivity.

"A big surprise for us seeing the structure was that the ligand was in an extended conformation and pointed perpendicular to the membrane, interacting with the extracellular loops," Stevens said.

This feature can be seen as the rationale for A2A receptor selectivity and may help in the design of new chemical entities with increased selectivity for this important drug target.


Stevens has focused on the structural studies of G protein-coupled receptors for almost two decades.


He is the director of the RoadMap Joint Center for Innovative Membrane Protein Technologies (2003), and a co-investigator of the PSI-2 Accelerated Technology Center for Gene to 3D Structures (2005),


both projects in collaboration with the Peter Kuhn laboratory at Scripps Research and funded by the National Institutes of Health, focused on the development of technologies to accelerate the study of human membrane protein structural biology.


The other authors of the study, The 2.6 Crystal Structure of a Human A2A Adenosine Receptor Bound to an Antagonist, are Veli-Pekka Jaakola, Mark T. Griffith, Michael A. Hanson, Vadim Cherezov, and Ellen Y.T. Chien of The Scripps Research Institute and J. Robert Lane and Adriaan P. IJzerman of the Leiden/Amsterdam Center for Drug Research, The Netherlands.


The study was supported by the National Institutes of Health, Pfizer, and the Dutch Top Institute Pharma.
----------------------------------------------

Adapted from materials provided by Scripps Research Institute.

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AliG
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PPS-
If you have a problem with people posting the word "Duck" in reference to emotionally abusive practitioners, the correct thing to do would be to SOB & report the perceived problem to the moderator, not to instigate an argument in an upset person's thread.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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tincup, i see your keyboard got STUCK on a word! [lol] [Wink] thanks for your comments.


LYMETOO... hilarious graphic!! [lol] [group hug] [kiss]


randibear and ali, thanks for your comments as well.


i was copying/breaking up the link from marnie and could not believe all the activity on this since we i read her reply!! uffda !! [Wink]

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AliG
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Just in case anyone has been sidetracked and forgot what the topic was:

quote:
Originally posted by bettyg:
i went to a parkinson's educational program at hospital; one of evening learning classes they give.

hubby has parkinsons and i'm positive it's secondary to UNDIAGNOSED LYME.


came time for Q/A, and i stated the following:


you forgot to mention 1 other thing of possibilities: chronic lyme disease.


my hubby has rolling hand tremors and freezing up in parkinson's and i feel it's secondary due to undiagnoed lyme disease.


i had him tested when i was diagned w/chronic lyme at igenex blood lab in calif. when we got the results, the dr. didn't know how to read the numbers/meaning, so he's gone undiagnosed.


DO YOU TEST FOR LYME DISEASE by western blot igm/igg?? later on...NO REPLY FROM HIM!


think i stopped there; may have thrown something else in.


so dr. says, the question is can lyme disease be parkinsons?


NO! in iowa's it's very RARE to have lyme disease according to cdc. it's mainly up north...minn/wisc. and east coast.


we test by spinal fluid testing and ..... of central nervous system. i can't remember what he said.

then he added other jibberish of WRONG statistics and calling it LYMES disease. he finished and started going to next person. i shook my head in disbelief.


i said, MAY I FOLLOWUP PLEASE ?


NO YOU CAN NOT! next question ...there.
********************************


so i packed up and left. shall i was angry with this DUCK? you betcha!


if you hear this HOG WASH; wouldn't you have spoken up to correct some facts.


i was going to say iowa as no. 15 nationwide!

You had every right to be upset. I would have been LIVID. Yes, Betty, I would have felt the need to try to get the info out there.

You did a great job! [group hug] [kiss]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Marnie
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Betty...the G proteins are helpers.

Think of 3 people in a row...one person whispers a secret to person #2 who then whispers the same secret to person #3.

Person #2 is a G protein.

It is sorta a "signal booster"...maybe the easiest way to understand if not technically correct.

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sunshinyday
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TuTu your picture is cracking me up.

AliG and TinCup - All I have to say is AMEN!

You both hit the nail on the head.

We all love Betty and to come here and disrupt her thread was uncalled for, especially over something as childish as this. We are to help each other and show support.

Ali I loved this-
"D O W N - W I T H - D U C K S !!!
They should all be PLUCKED!"

Love you Betty, please keep us posted on your husband!

Look, I have all of my ducks in a row! QUACK...



QUACK QUACK
Ditto!!!

Gail

--------------------
Gail

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2roads
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I sure would of.


Even though you don't think you accomplished much other then to be reminded of duck ignorance, I think you did more.

As my in law says "you sewed a seed"....planted a thought. Hopefully with the quack. Most importantly, with others suffering in the room.

Seeds can be powerful over time, growing into salvation and success stories.

Keep up the good work, as always Betty!


All this election stuff and stuff, and I just got a silly jingle in my head- "Bettyg, Bettyg she's got it goin' on for you and me." [kiss]


Feel better,

Greta

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Boomerang
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Betty, so sorry to hear you were given such a hard time by the duck. Also sorry that your thread got hijacked...ridiculous.

Best wishes to you and your hubby!

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B and M
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Betty,

I don't have any technical answers for you, but I can tell you about my experiences.

I also have Parkenson's like symptoms. The shakingsi both in my arms and head (neck).

I never had this until I started to get sick with Lyme. Now the shaking and memory are probably my 2 worst symptoms. Alot of the others have eased.

My LLMD told me this shaking will go away in the course of my treatment.

I forgot if he thinks this symptom is from Lyme or Babesia. Did I mention that I have a problem with my memory? [Big Grin]

Anyway, I fully believe in your assessment of your husband. Since it sounds a lot like me.

But then maybe a side effect of the Parkinson's is a positive Lyme test!

I also was very stubborn about getting tested. My wife insisted for a year that I had Lyme before I would get tested.

I hope you can get you husband treated.

Good Luck,
B

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Geneal
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You go Mrs. Bettyg!!! [Smile]

I am so very proud of you.

It isn't easy to stand up and speak the truth

To people who don't or cannot begin to believe.

On a side note, I like the word duck.

I have worked in numerous hospitals.

Worked in Acute Care, ICU, CCU, Stroke Rehab, etc.

We (who have worked in hospitals) have a word for docs

Who demonstrate no bedside manner, no respect for others and with major ego issues. [shake]

We called them Toads.

Everybody did. Nurses, aides, PT's, OT's, ST's, etc.

Childish? Maybe.

However, I for one, was not about to walk up to a Neurologist or Neuro Psychologist

And deliver a speech in regards to their professionalism or personality (lack there of).

Especially when I was usually trying to get an order to Eval and Treat.

I say to BettyG to keep on calling them like you see them.

Get your husband to a LLMD please.

My brother-n-law was diagnosed with Post Traumatic Parkinson's.

The "Post Traumatic" part is made up as there is no such thing.

I know he has Lyme disease.

He can't even tell you the number of ticks he has pulled off himself deer hunting. [Eek!]

My hugs and kisses to you.

[group hug] [kiss]

If that doesn't work, use those new knees and do the Polka on their behinds. [Big Grin]

Hugs,

Geneal

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cottonbrain
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Betty, thank you so very much for speaking out. Not many of us would have the courage to do that in a crowded room

despite all the abuse many of us have suffered at the hands of those who are supposed to "first do no harm."

It would be great to do what that reporter did the other day -- bring some handcuffs and make a citizen's arrest for crimes against humanity -- the duck's refusal to confront Lyme.

(dont flame me, people, i'm only kidding -- sort of)

Betty, best of luck to you and your hubby in fighting these diseases. And thank you again for daring to stand up. Your husband must be very proud of you.

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seibertneurolyme
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Betty,

Good for you for speaking up. Who knows maybe someone in the audience will go get tested for Lyme disease because of what you said.

Hubby just got back from his LLMD appointment. He had a "spell" in the doc's office. Lots of tremors and shaking and the pill rolling you mentioned and he also froze up. This wasn't nearly as bad as the ER visit last Friday thank goodness.

But the LLMD told us more in 5 minutes than the 25 or 30 neuros hubby has seen in the last 7 years.

I really wish you could get your hubby to an ACAM doc or a LLMD who could try a glutathione IV on your husband. They can help with both Parkinson's and Lyme patients.

We actually stopped using the glutathione a couple of months ago hubby was doing so well and the more expensive brand of alpha lipoic acid seemed to be helping his body make more glutathione.

Anyway, the IV in the LLMD's office helped hubby a lot. And the LLMD prescribed a new med for hubby. Seems to be working miracles so far. This is a med I would never have thought of myself.

Based on hubby's SPECT scan and his response to heparin hubby and I were pretty sure that the main cause of his tremors and Parkinson's type symptoms was lack of oxygen to the brain.

The LLMD agreed that bloodflow could be hubby's problem. Even though hubby has normal or even slightly low blood pressure the LLMD prescribed Benicar. This blood pressure med is a vasodilator which allows more blood to go through the veins.

Med has helped with hubby's dizzyness and he hardly had any tremors at all today. I just hope his blood pressure doesn't go too low since it really seems like this med may really help for now.

Is your hubby taking CoQ10? -- the suggested dose for Parkinson's is really high, but it is supposed to actually stop the progression of the disease.

Bea Seibert

P.S. The P.A. in the LLMD's office seemed to think that the Parkinson's symptoms were probably actually from Bartonella/BLO/mycoplasma instead of Lyme. That is also what hubby and I think. A different LLMD told hubby that he thought Lyme or babesia or bartonella could cause Parkinsons type symptoms.

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bettyg
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just remembered a few more details from last night... added it to top post.

edited: corrected some misspellings and adding a few more thoughts i'd forgotten last night.


room had been 50-70 folks; so many folks there but the coordinator of program did NOT have the normal microphone to go from 1 person to another so all in room could here.


dr. did state if meds helped with tremors, freezing up, hullucinations, etc.... patient has PARKINGSON'S.


if meds don't help w/tremors, etc. and patient STILL HAS ... they do NOT HAVE PARKINSON'S but a "parkinson's LIKE disease".


so what is a parkinson's like disease?

another woman made a statement earlier she had been dx w/PD, put on meds, etc. i couldn't hear all of her comments but got better, and then relapsed.


he informed her she NEVER had parkinson's too ... it was parkinson's like disease!


never dreamt this post would bring 50 replies to date/time when i'm adding this! and all over "duck" being used once!

*********************************

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bettyg
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yes, i guess i planted a seed in many of their minds.


thank you ALL for your additional info and way too many names to list separately ... hope you understand; i can't remember names well!!


"All this election stuff and stuff, and I just got a silly jingle in my head-

"Bettyg, Bettyg she's got it goin' on for you and me."
Feel better, Greta


Greta, that was hilarious!! hubby asked me if i'd had any more replies so i read him the informative ones, and he laughed at yours and a few others!


we got a kick out of all the duck graphics here! so much creativity !!


B and M, thanks for sharing your story with me.

Bea, my husband listened to yours and B/M about your personal experiences.


"Betty, I want you to stop worrying about me; I don't want to go to any more drs. and i can NOT TRAVEL; takes 5-10 minutes to get in/out each time. "


i told him i was still going to look into things and i'd like to see what getting on abx would do and some of the other suggestions above!


boy is he stubborn! guess he's rubbed off on me but some family heritage!! [Big Grin] [lol]

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scared08
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Geneal,
I wanted to comment on your post first as my memory it terrible! I'm an RN and worked in many differant specialties from GP to Surgary. I CAN'T AGREE WITH YOU MORE!!!!!!!

I haven't been able to work in 15yrs. now, and being on the other end as a patient; I am the WORST patient in the world!!!!

We used to have our own names for some of the Docs too. Too many of them have a suge a huge, unjustified ego and think they know it all. When something comes there way that they don't know what to do about, they say the patient has mental problems!!!! If questioned, they get VERY angry----Hhhmmmm, could it be because they're embarressed in not knowing how to diag. the patient, to ignorant to take the time to keep themself's up-dated/current as medicine is constantly changing, or take the time look it up in that proudly displayed shelf full of medical books that haven't been opened in years!!!!!?????

I'm sorry but "duck" is a very nice word for the as****es that so many of them are!!! Not all---but many!! Forgive me, the more I typed, the more of a rampage I found myself on!!

BettyG--- [woohoo]

Good for you dear!!!! Although this guy was too ignorant to continue the conversation with you, you where heard my all of the others that where there!!!!

So even though I know he was rude and you where sooooo much nicer than I would have been; I hope that you realize just by asking the 1rst question, you raised many eyebrows in that room!!!! My guess is that many of them where Dr.'s also.

I think I can safely say this, THANK YOU FROM ALL OF US!!!! You did raise some awareness!

And honey, my heart just breaks for you and your husband; I'm so sorry!! Bless your heart!!

Ya know, many of us have lesions in the brain. Many, like me, in the Basil Ganglia which controls our motor function, movements. Alzhiemers is often diagnosed by the finding of lesions in the Basil Ganglia!!

The movement problems that you mentioned about your husband, I do the exact same thing. I spoke to another Lyme patient in Ill. that does the exact same thing--a leg freezing, ect....

Many studies are being done, and some are leaning towards the theory that Lyme may be the cause of Alzhiemers.

Just a side note----I have much respect for a Dr. that has looked at me and said, " I just don't know what's wrong." A Dr. that can look you in the eye when it is so obvious that you are so sick and tell you to see a Psyc., they have earned whatever you want to call them!!!!

I once threw a Trach Tube at an ER Doc.!!!!! Ya know the only thing that I was upset about when I left was that I MISSED HIM!!!!!!

That is way out of character for me. I'm really not a terrable person!!! Sadly, he deserved it!

Take care my dear and many prayers for you and your husband.

Oh,and one for me for cussing---eeekkkk!

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ThatColorGreen
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bettyg,

sorry to hear about the jerk you encountered.

I can empathize with your frustration and anger; i recently had a similar event.. ( [cussing] )


I don't know why more docs, esp neuros, will not look at lyme, since it ends up being very neuroligical.

my grandmother has 'parkinsons' and 'fibromyalgia'... whatever.

no one will even consider the lyme dx and it annoys the hell out of me.

So as others have said, good for you for speaking up.

As for the whole 'duck' stuff. I like it too.

After all of the years we go through as ignored and belittled patients, why are we expected to hold it in?

Sorry, but it's gotta come out somewhere b/c if i can't express how i feel, it will just make me more sick.

also, i feel very jusitifed in being able to use the term because my colleagues are all pre meds and i see how many of them are.

Ducks they shall become. You wouldn't believe how many preHEALTH (not only premeds) will not come to the screening of Under Our Skin.

It frustrates me to no end. When I make an announcement in class or at one of the pre-professional group meetings,

i mention that no professional school teaches this ... it spreading at a rate over 4x of HIV ... etc etc

and still, only a VERY small fraction have responded. Most simply do not care. Luckily, there are SOME that are interested because they are going into medicine for the RIGHT reasons.

Medical education does not stop after you graduate medical school or after residency; it is a life-long process.

Anyway, I could really keep going, but this this is getting too long (sorry about that)

point is: good job betty. Don't let the Ducks get you down. They're just a bunch of A holes!!

Much love,
~Green~
[group hug] [group hug]

[ 07. November 2008, 11:30 AM: Message edited by: ThatColorGreen ]

--------------------
...trying to be the coffee bean, not the egg.

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bettyg
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scared,

thanks for your RN comments to geneal; i'm still laughing over them!

thanks for your sincere wishes for hubby/me.


other things i don't understand well are these:

1. he has terrible time getting tshirts on/off; it gets all lumped up right behind the neck and he can't get it shifted down.


2. it's so easy to bump him and he is NOT a solid rock; he starts a falling motion promptly.


3. he's fallen 4 times earlier this year; took me 30 minutes on july 4th to get him up calling a close friend for him to come over and he was able to in 5 minutes.


4. slowness .. he told me other day when he turns his body, he's afraid that he's going to fall each time. guess this is how he has felt the other times he fell outside and once on living room floor.


thanks for your input helping me to understand the disease and what i can do to HELP continue being supportive. *************************


the only places he goes to are:

drs/hearing aid center, groceries, and rarely to pick up his/my meds since he has to sign for them.


yes, thank you God and my beloved deceased Mom for being a very vocal lady and speaking up when need be in front of groups, etc.


i never know how i'm going to phrase something, i try to work it out in my mind, but i start talking and what comes ... comes!


thanks again for useful info, support, and compassion for us.


may God bless you all as he has blessed me/hubby! hubby NEVER complains; his glass if 50% full. [group hug] [kiss]

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bettyg
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green, i can't keep up with all the replies.


good for you for announcing this at school and encouraging people to attend under our skin, etc!!

i approached our local hospital CEO and library at same time about screening UNDER OUR SKIN.


told hospital ceo i wanted to get 1 separate session for ALL DRS/RNS/ staff who deal with patients and diagnose them with lyme ... it could be credit towards annual MEDICAL CREDITS THEY HAVE TO GET.


hospital ceo has NOT replied. my request for hospital screening fell thru cracks since a newbie started.


i'm going to work on april 09 after our horrible iowa icy/blizzard weather.

i'll pursue the DRS. attending again.


the local huge clinic located in many counties in central iowa CEO has not returned a reply to either of my letters to him about lyme disease.


hubby's parkinson's dr. is ON BOARD OF DIRECTORS; so i pursued this with him, and asked him to get me a reply. he promised me but nothing so far.


this same neurologist is also pres. of all iowa drs. and worked hard on a bill there on cutting medicare benefits to hospitals/clinics. so his hands have been full.


saw him 2 months ago and handed him a note after he spoke at educational program like one at top; he stated he forgot but would pursue my hearing from ceo at clinic. ****************


i won't be forgotten! bad thing is i live 5 minutes from hospital/clinic; i don't want them refusing to treat me either! but i won't be run over while i'm still alive... [toilet] [tsk] [puke]

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Robin123
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TC, I see your keyboard got its Q back - otherwise, we'd be seeing UACK UACK UACK UACK UACK UACK UACK UACK UACK UACK UACK
which actually could still come across as a ducklike sound, I guess...

Betty - I suggest going back with some info for the hospital and the duck - about Iowa stats, mention the memorial scene in UOS, brief statement about Lyme all over the country and world in general, testing, and any info you could get linking Parkinson's to Lyme.

Bea, that's quite a list there of possible Parkinson's like disease: bart, BLO, mycoplasma, babesia - has anyone done any testing making these links?

And I agree with you - any public mention of Lyme can help alert others in the room.

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MY3BOYS
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betty g: best wishes in getting your hubby well..as for myself i can say i am newly dx. with
lyme and work in medicine myself

i had no idea this was as complicated as i have
now learned..yes this was just ignorence on my part which i decided to educate myself as to what lyme disease really is and what an eye opener this has become

in medicine we are taught certain things: disease, tx, signs/symptoms/ etc. there is still much to be learned about bacteria/ viruses and the such.

i pray that some of the new research out there begins to open more doors and minds.

betty, as side note-- you seem very educated and commited to educating others, may i suggest looking to use the opportunity to set up
inservice teaching with local home health agencies as well??? esp. if can be CE credits

from personal experience i can say that working
in community based healthcare, good nurses (i know this is not all of them !!! believe me)

will try to educate themselves when they come

across something they are not familiar with

this may be one avenue worth persuing as home

nurses do have good relationships with some docs

and see "more of the big picture" than the docs do and when a good partnership is there can

be respected for their findings/suggestions.

most doc have but a few minutes in the exam room

with the patient and as home health nurse we may

be out there with them for hours several times

per week, just a thought...like i said i am new

to this myself and trying to make since of what

forgien invaders have taken over my body and mind

best wishes and god bless

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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Mo
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it's always a red flag when any professional cannot, or will not answer questions to back their opinions, or acknowledge information.

i mean, if one is a "professional", it should be no problem to ask them them reasonable questions
and/or to explain their beliefs.

gotta really try and steer clear of anyone that states "it's so because i say it's so." or makes you feel small for inquiries, any inquiries at all.

sorry to hear this betty, i hope you can find paths of less resistance!

mo

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Tick Tock
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Getting back to Betty, again:

I am glad you spoke up. A lot of people don't have the courage to do that.

It seems that with every person I talk with about Lyme, I am chipping away, ever so slowly, to change the perceptions/myths... of Lyme.

Thanks for chipping away a little more.

I had the opportunity to speak with the Director of the Dept of Health in my state. He's an MD. He's had the IDSA cool aid so you can imagine how the conversation went.

He told me I don't have Lyme but rather MS, fibromyalgia, chronic fatigue, early Alzheimer's and that it's coincidental that I got better on ABX. After 2 weeks of ABX one is simply cured of Lyme!

Ha!

Thanks again.

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tickssuck
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Dear Betty,

As I mentioned before, sorry the doc was so dismissive and disrespectful to you. THANK YOU for standing up and speaking out; and FOR ALL YOU DO on this board.

I, along with a couple of other Lymies, are setting up a screening of UOS in January '09 at our local hospital's community ed building. I am so excited!!! Just hearing your experience and the tragic loss of Leslie Wermers this week has just fueled my fire even more to try to educate others.

Again, each time one of us speaks up, we may impact and educate even just one more person, so important. We may not even know it...but, we may be saving a life from chronic illness or an untimely death.

Thank you again Betty. I pray for improvement for you and your husband. TS

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blaze
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I don't think we should be nitpicking about the word 'duck'. That's just so high school - not the word, but the nitpicking, that is.
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bettyg
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my3boys,

thank you for the good suggestion and compliment of how i've educated myself thru LYMENET board members/many files here of accurate info.


i'm a disabled secretary off work 10 yrs, which took 5 yrs. to get SSDI ~~ pure hell and 3 drawers full of a 4-drawer file of medical paperwork and RED TAPE reduntancy.


i do understand what you are saying; for those of you RNs/LPNS, good advise you gave for those still working.


tick tock ... what mentality you spoke too! [tsk]

yes, everyone doesn't have the courage/guts to speak up but that has been me from a very young girl! i thought i did it respectfully also...

may i and please!


robin, yes, i plan on talking to hospital CEO PERSONALLY this time; will make an appt. with him.

side note: when i redid my will last year, i designated a certain $$ % be left for their diabetes and EDUCATION center. MONEY TALKS AS A FUTURE BENEFACTOR!!

that is providing hubby/i do NOT end up in nursing home using all we have been able to save in our middle-income earning jobs.


ticksuck .. thank you for the compliments as well and for what i try to do here on this board! it's heartfelt and makes MY heart feel super good! [group hug] [kiss]


sorry, i couldn't respond to every post above; it's just too overwhelming going back and forth to read someone's post; have a 2nd window open and then type a response, and then go back to reading/replying.


BUT heartfelt thanks for those who responded on my experience w/this man and suggestions for me on hubby's lyme/parkinson's!! [group hug] [kiss]

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bettyg
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PLEASE HELP ON THESE QUESTIONS OF MINE ....


other things i don't understand well are these:

1. he has terrible time getting tshirts on/off; it gets all lumped up right behind the neck and he can't get it shifted down.


2. it's so easy to bump him and he is NOT a solid rock; he starts a falling motion promptly.


3. he's fallen 4 times earlier this year; took me 30 minutes on july 4th to get him up calling a close friend for him to come over and he was able to in 5 minutes.


4. slowness .. he told me other day when he turns his body, he's afraid that he's going to fall each time. guess this is how he has felt the other times he fell outside and once on living room floor.


thanks for your input helping me to understand the disease and what i can do to HELP continue being supportive. *************************


the only places he goes to are:

drs/hearing aid center, groceries, and rarely to pick up his/my meds since he has to sign for them.


yes, thank you God and my beloved deceased Mom for being a very vocal lady and speaking up when need be in front of groups, etc.


i never know how i'm going to phrase something, i try to work it out in my mind, but i start talking and what comes ... comes!


thanks again for useful info, support, and compassion for us.


may God bless you all as he has blessed me/hubby! hubby NEVER complains; his glass if 50% full.

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AliG
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Betty,

I'm just curious, has hubby's heart been checked out lately? Is he on any medications?

When my dad was in A-Fib, he was having a lot of problems like that & since they put him on Coumadin he's been doing MUCH better.

[group hug]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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hi ali,

no, his heart has NOT been checked except for when they listen during normal appt.


on 3 meds only: levothyroxine, amantidine, and carbodoba/levo

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MY3BOYS
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on falling: neuro symptom ???
(also around here volunteer fireman will help

with someone who falls and needs help to get

up at no charge..ems will charge but the volunteer have helped many a time..might call to check?? ))

would suggest having cardio looked at and check

for PMH with tilt table?? i myself need this too

and will timber if i close my eyes and balance

out of whack..seems like something kicking in the

autonomic nervous system..

on dressing: OT therapy may help, teaches patients to re-learn dressing, bathing, etc and use adaptive measures or adaptive equip.
is covered by medicare with no cost to pt.

best wishes

--------------------
i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **

dx in 08:lyme, rmsf, bart, babs, and m.pneumonia.

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bettyg
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my 3 boys,

thank you for your suggestions and advise on my hubby's symptoms! [group hug] [kiss]

i'll have to check into the firemen as their main building is 10 blocks from us! we're right in the middle of mainy things ... clinic, hospital, fire station, and shopping mall 5 minutes away.


i will discuss your suggestions with him!

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randibear
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betty, remember hon, that my mom's symptoms sound very much like your husband's.

not to scare you, but please make sure he has a complete cardiac checkup.

they found her congestive heart failure too late.

but i still say LYME.....

--------------------
do not look back when the only course is forward

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GraceT
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TINCUP - Your Quack - Quack post gave me the best laugh I've had all day. SMILES - Gracie
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bettyg
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randi, thank you for your comments on your own mom!


gracie...glad you enjoyed tincup's quacks!! her keyboard was acting up before and it was Q that would not type!! she made up for it.... [Big Grin] [lol]

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just don
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Just an after thought.

A local parky friend of mine from old had great success with an operation that takes most of there 'shake' away.

Would that help your hubby?

And here I go,,,jumping right square into the "FRAY"

Blame TUTU for that pic of hers.

I think it is not supportive(okay, derogatory) of our feathered friends,,, to call these MD's 'there' rightful name.

I make a motion we invent a completely NEW word which is a spin off. let us use TUTU's word for it,,,"dux" and no I didnt captilize it on purpose. (cause they dont deserve it)

AND I dont KNOW if a dux quacks or just "sux". maybe they are just quack suxers

For pity sakes folks,,,we have been calling the ducks,,,ducks,,, since the beginning of time,,,lets just "MOVE ON" to bigger pastures everyone!!!

Instead of frying minnows,,,lets fry some BIGGER fish!!!while I remain--just don--

--------------------
just don

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bettyg
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hi don, we sure have missed your words of wisdom and compassion on theboard!! xox thanks for suggestion though. [Smile]


hubby had his eyes operated on; i'm sure he wouldn't allow the shuttle type thing hooked up to his brain! he hates HOSPITALS and drs. offices with a deep passion.


he lost many in his family at young ages...


don, i'm still laughing from your other remarks though!! you're quite the poet!!


DUX SUX !! [lol] [lol] [Big Grin]

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