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» LymeNet Flash » Questions and Discussion » General Support » Do you tell your other ducks about your lyme or say nothing?

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Author Topic: Do you tell your other ducks about your lyme or say nothing?
TS96
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Okay....
Say you need to see the local duck about something that you wouldn't see your llmd about. Do you bring up Lyme or do you hide it?

Also when you get an official diagnosis from the llmd does your PCP and other ducks have to or need to know?
Just wondering....

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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sixgoofykids
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I only tell them if they need to know. I was at the ob/gyn and needed to tell him so he'd know I was on medication .... boy was I ever sorry .... I got lectured on how Lyme docs were a scam, anyone who only treats Lyme should be held in suspicion .... so only tell them what they need to know to treat you.

--------------------
sixgoofykids.blogspot.com

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TS96
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My GYN said she won't give me a Dexa unless a Dr. requests it for me because I'm not at menopausal age yet.

I'm gluten intolerant which my duck does not recognize and I'm allergic to all dairy which my duck does not recognize because of the lab I used.

My hair analysis shows I'm also at risk for osteoporosis but duck doesn't recognize this either

What would you all recommend I do to get the scan?

Thanks Six Goofy Kids

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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CaliforniaLyme
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Boy am I lucky- my PCP is a local LLMD and all the local docs who know him respect him!!! Even my cardiologist!!!!!!!!!!!!!!!!!!!!!!

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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Lymetoo
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I really went out on a limb this week by telling my new ENT that I had had chronic Lyme. I let him know it was in remission.

He never said a word. I felt I had to tell him since I didn't want him to give me steroids. My other ENT didnt' say anything about the Lyme either.

For some reason, it's not seen as an imaginary disease around here....THANK GOODNESS!!!

I'm shocked every time they DON'T ridicule me, because it DID happen to me once when I was first diagnosed. It was an ugly scene!!

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

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Cobweb
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yeah- you are lucky. I think I'd like to move to California-I even have relatives there.

I had been taking my daughter to my LLMD for several months-without telling her pediatrician-because I knew which side of the fence the pediatriacian was on-

so when the inevitable day came and I had to take her to the pediatrician I felt compelled to tell her about LLMD and how my daughter was being treated.

I got what I expected-total skepticism and warnings about rogue doctors. and a bunch more tests for daughter for everything but lyme.

So when this testing came back negative rather than consider Lyme, pediatrician suggested psychiatrist. Wonder who's heard that before!

I personally do tell my docs. I just hand them a list of my meds, tell them I am being treated for Lyme Disease, and then I disregard their disregard. [Big Grin]

Cobby

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bettyg
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i tell every dr. i have appts. with that i have chronic lyme! i have NEVER had any problem.

even my hip surgeon during after re-checks said he was interested,, so next time i brought him copies of all my lyme brochures, guidelines. he even noted in my chart i gave him informational lyme brochures! [group hug] [kiss]

those who "get" me find out very find out very fast that I AM VOCAL and will not put up with their crap and when to tell them to back off!! [cussing]

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lymex5&counting
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It has gotten to the point we are on so many meds we have no choice.

While in the ER with my oldest last week while I went to the bathroom the Dr had the adacedy (sp?)
to say to my son

"You don't really have all those things your mother said, do you?"


My son said "Yes, I do."

I had mentioned lyme, rmsf, mycoplasma, babs, bart, thyroid problems and heavy metal poisoning.

Thank God I was half way home when he told me that. I was so [cussing] [cussing] [cussing]

But 2 months ago when my other boy broke his arm the Orthopedic surgeon was quite impressed and knew about lyme, chelation, home birth, etc. But he kept asking me if I was from California!

At the pre-op for his surgery. The nurse was a total *****. She rolled her eyes at his meds and lyme. I also told her I wanted him to have an EKG before being put under since the 1st time he saw DR J in 2005 he found a heart murmur no one else had ever found and immed sent him for an ECHO at the childrens hosp when we got home. She said he is 12 not 40, so it wasn't justifiable. So after I refused to sign the paper work. She called Cardiology. A Cardiologist came and listened to my son of course he didn't hear it because you can only hear it if he is lying down. He told her to do the EKG. HA! He said his brother has Lyme. He told me it was too bad I couldn't educate the people at the hosp about it. Not sure if he was patronizing me there but I decided to take it as a compliment and I got what I wanted a clean bill of health.

Oh yeah! When she did the EKG I told my son to tell me if it hurt. Then she the ***** nurse really started in on me. She told me it wouldn't hurt, that was ridiculous and that I shouldn't scare my son. I told her that it was important for him to tell me so I could inform his llmd. And she kept arguing with me. I told her if he had nerve issues I wanted to know.

My last EKG they could have been shooting lightening down my right arm, I was almost screaming I was in so much pain. The 2 nurses doing it I think they thought I was nuts.

2 months later I told my llneuro he about had a heart attack I hadn't told him sooner. He ran a bunch of blood cancer screens and an anti myelin test, I came back positive for the Peripheril nerve damage 6 fold. He says that is why I felt it.

And lets not even get into the day the Pharmacy tech called my kids llmd an idiot as she hands me the wrong meds.

Xanax saves me from going off to the point of getting arrested atleast so far. [lol]

If you can't tell I am angry about the ignorance lately. And the fact that my whole family is SICK!

Lyme x 9

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beckyM
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I weant to my orthopadesit for a follow up for my rotator cuff surgery which hasnt healed to well and I was on the fence about what to tell him.

I decided, for some reason to throw it out there and see what his reaction would be.

When I told him that I was being treated for Lyme (and even told him my tests were technically negative by CDC standards) he looked at me and said "well, that makes sense"

He explained to me that a lot of the nerve pain that I have been reporting to him over the past few months that couldnt be explained now had a reason.

I alsmost fell of the table. He not only believed me, but he didnt even question the fact that the tests were technically negative.

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Cobweb
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Something we can all identify with-but so poignant when it comes out of the mouths of our children..

My daughter ,about her pediatrician-after years of unresolved health issues and keeps suggesting a shrink, "maybe she doesn't believe me"

To finally go to an LLMD who not only believes her but empowers her is so refreshing.

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TS96
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Thanks for all the stories.

Well... I guess if only absolutly necessary then I will speak up, otherwise say nothing.


I have heavy metal toxicity and candida and TMJ and I don't ever want to see a reg Dr. again! They have made me feel so bad with their snooty remarks.

I too had my Ped. Dr. say.... my dd should see a psychiatrist because her tummy hurt all the time.

So Sad.... [Frown]

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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MagicAcorn
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I think it depends on each individual's medical picture.

I have so many secondary conditions that it would not be in my best interests to keep it secret.

Also if you are lucky to have medical evidence to back up your clinical diagnoses, you are in a better place also with other doctors.

I like Lymetoo have not experienced too much flack.


 -

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TS96
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You're right MagicAcorn.

My secondary issues are all allusive to my Drs. All of the things I have are not covered under insurance .
If I stuck with my original diagnosis of Fibro/cfs I 'd be ok in mainstream medicine, and have all the drugs I wanted, no questions, and no funny looks
[dizzy]

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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tdtid
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I have had my share of doctors belittling a "lyme diagnosis" as well, so I definitely understand the delima here.

But considering that we are taking so many various medications for this, I don't think it's in our best interest to not say anything, especially if the new doctor may be prescibing anything.

One thing that I have found that helps, is that if you have ANY of the co infections, use that. I tell them I'm being treated for bartonella and Babesia. For some reason, it doesn't trigger the same "you are crazy" attitude as if you use that bad word, "lyme".

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

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Lymetoo
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quote:
Originally posted by tdtid:
One thing that I have found that helps, is that if you have ANY of the co infections, use that. I tell them I'm being treated for bartonella and Babesia. For some reason, it doesn't trigger the same "you are crazy" attitude as if you use that bad word, "lyme".

True....and you can also tell them you have Borrelia. That will throw them since most won't know what that is, nor why it requires antibiotics. [Big Grin]

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

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bettyg
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acorn, love your santa squirrel; you rascal you! they just keep getting better and better! welll done, and thanks for giving us laughter each day with your squirrel photos! [group hug] [kiss]
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Michelle M
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For me it is strictly on a need-to-know basis.

There is so much arrogance and stupidity combined in most doctors that it is really taxing to deal with them.

More and more I try to press my LLMD into service as a GP!!! (Which he actually is -- a family practice doctor!)

Fortunately, it is not difficult to learn more about lyme disease than your run-of-the-mill duck.

In fact, it would not be a stretch to suggest that most regular readers of this Board probably already know more about tickborne diseases than most ducks.

I took my daughter to the local duck a couple weeks ago because she was suffering from what appeared to be a bladder infection. NO, she is not having sex or even allowed out of the house yet!!! They drew blood. Nothing was amiss.

I explained her lyme history (CDC positive), her two relapses, most recently Bell's Palsy.

I explained also that her tinnitus/hearing loss was getting really bad -- so bad she cannot sleep on her bad side for the noise.

The duck actually looked at me and said tinnitus and hearing loss are in NO way remotely related to lyme.

I said "Well, actually, it frequently IS. In fact, that is why I made a point of mentioning her Bell's Palsy last year -- they're both neurological symptoms; cranial nerve symptoms in fact. So I wanted to make sure there was no kind of obvious ear infection. (There was none seen). The 7th and 8th cranial nerves (Bell's Palsy/facial nerves and hearing/balance nerves) share the same pathway for a time and she does have neurological lyme disease, so I am thinking absent any signs of infection that may be what the problem is."

She looked stunned. And was hastily done with us. Probably wrote "Munchausen's Syndrome" in Georgia's chart. No matter -- I went there mainly to rule out an obvious infection, which she accomplished.

I was sorely tempted to send her some abstracts.

I make it my mission to educate ducks, whether they like it or not.

Generally speaking, they don't.

Michelle

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Geneal
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That is a tough question.

When I went for my yearly OB visit, one of the things they ask you for

Is any meds you are on.

Okay. I was in the middle of bart/Lyme treatment with many

Different antibiotics.

I didn't volunteer Lyme. Then my OB insisted on knowing why I was on so many meds.

I told him. All he wanted to know was the name of the doctor Rx'ing all of these meds.

I smiled and told him that he wouldn't know him as he does not practice

Gynecology and You (the OB-GYN) doesn't treat Lyme. [Big Grin]

I only listed meds in case he wanted to Rx me something.

Next year I will say Nothing.

Hugs,

Geneal

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TS96
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Thanks for sharing your story Michelle. I'm sorry that happened to you.

Geneal, I'll have to write down the response you made to your GYN for my future use. [Big Grin] (I can see it now.... getting out my queue card and reading her my planned response)

I think another reason why I don't want to share info on meds etc.... is that I'd probably stutter and shake and break out in a panic attack if I had to respond. My brain just doesn't think or react like it's suppose to anymore.

It would take days for me to recover from a stressful event like that.

--------------------
Bart Henslea 1976
Fibro/CFS/arthritis 2004
Lyme diagnosed 2007
3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good.

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evgen
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here in Russia when you say someone you've got lyme they immediately tell you you're nuts

--------------------
~From Russia with Lyme~

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