Why wear a ribbon?

"I wear this ribbon because I have chronic neurological Lyme disease. It has chan..." (aandm)

MDJunction to me

"MDJ gave me the chance to see that, in reality, I was not alone. It is my refuge. It means true understanding, shared knowledge, and support that is free of judgment. What I have received and given here is more powerful than I ever thought it could be. This place is all about love." (Cata)

more testimonials

Lyme Disease Support Group

A community of patients, family members and friends dedicated to dealing with lyme disease, together.

Group Home

Forums

Articles

Members (7831)

Diaries

Leaders

Guidelines

Lyme Disease Forums › General & Support › educating the doctor

04/17/2012 11:32 AM

educating the doctor

mysticthecat

Posts: 1658
Group Leader

Here's a little antecdote for you.

Went to the family doc yesterday because my son's 3 wks of doxy was running out and we have 5 wks till the LLMD appt.

Doc said 3 weeks is the maximum for treatment... no more doxy. I said I don't want him dx and treated via the CDC protocol.

Instead, I want him dx and treated by the ILADS protocol. (I don't think he knew what I was talking about)

I said we've been coming here for 10 years asking you folks to help figure out son's joint pain, gi trouble, adhd, migranes, insomnia, constant colds, flus'...

I've taken your advice and hauled him all over New England to all the top doctors chasing this thing.

Now there is something (lyme) that fits all the symptoms and he has one positive blood test.

Even the CDC says that the dx has to be clinical. All I'm asking for is enough doxy to get him through until the LLMD appt.

He proceeded to write the script for 6 more weeks of doxy while mumbling something about mutating bugs.

Then he wrote two more scripts.

One for a nasal steriod and one for a thing to reduce stomach acid. I will likely just throw those two out. They would just cover symptoms.

So, I thought you'd enjoy... maybe we can educate the family docs.

emphasized more, bettyg, leader

Post edited by: Bettyg, at: 04/19/2012 03:08 AM

I am not in the medical field and anything I say is simply my opinion and should not replace the advice of your doctor.

04/17/2012 12:07 PM Top

krystle2

Posts: 467
Member

I will be doing that with our GP. My husbands western blot came

back with band 41 positive. They called, said he doesnt have lyme.

Me- lyme freak that I am - had him tested thru LLMD Igenex, he

is positive.

I will be taking those tests results over to him as soon as I get

them. How many people has he sent on their way and said they didn't

have lyme? VERY FRUSTRATING!

Previous discussions I participated in:
Lyme test
Hair loss with Lymes
22 stressed and want to cry

04/17/2012 12:17 PM Top

mysticthecat

Posts: 1658
Group Leader

Krystle-

Lyme freaks unite... My son thinks I'm crazy, but he appreciates how I stand up for him and speak my mind to the docs. Good luck with your family doc.

Cat

I am not in the medical field and anything I say is simply my opinion and should not replace the advice of your doctor.

Previous discussions I participated in:
Ever wonder if almost ALL ppl may have Lyme?
Vitamin D???????
Running with Lyme?

04/17/2012 01:08 PM Top

littlegirlbigdream

Posts: 617
Member

I guess I am really lucky. My family doctor acctually was about to offer us to get the Igenex test done, untill we stated that my natural path did it and it came back postive.

He told us that he will treat me with long term antibiotics. I am so happy I go back to see him on Friday.

But he said he would only do it with the guidance of a Doctor in BC Canada. So I talk to him in an hour or so.

But yeah you need to stand up for what you believe in expecially when it comes to your kids.

Let me tell you he is lucky for you to be standing up for him, I am now 16 and had to wait over a year for my parents to finally agree to get the Igenex test done.

I do not know how old your son is, but I am sure he is very proud to have you to be his adovcate, so he does not have to fight all the way, expecially when he is at his worst.

I am not a doctor, what advice I give is from my own experience and things I've learned through others.

Igenex Feb 2012:
IgM: 34+ 39IND 41++
IgG:41+

"It is the possibility that keeps me going not the guarantee" - Nicholas Sparks

~Melanie~

Previous discussions I participated in:
Parents
Cat's Claw?
Low body temp?

04/18/2012 03:16 PM Top

mysticthecat

Posts: 1658
Group Leader

Big Dreams -

Thanks, he's 15. I hope your docs visit went well!

I am not in the medical field and anything I say is simply my opinion and should not replace the advice of your doctor.

Previous discussions I participated in:
Ever wonder if almost ALL ppl may have Lyme?
Vitamin D???????
Running with Lyme?

04/19/2012 03:12 AM Top

Bettyg

Posts: 26579
VIP Member
I'm an Advocate

BRAVO!! encore Wink

i'm so proud of you!!

always have FACTS when going to the drs. office where they can't say you are wrong, and point out where their MISUNDERSTANDING is.

be in control!!

HANG ON TO THE OTHER 2 RX!!

nasal steroid, what's the name of it? i use my inhaler, XOPENEX, and it's my lifesaver at breathing thruout the night when i sleep.

what was the RX name for gi?

this is a success story, post it in the SUCCESS STORY sticky pin at top of support ok!!

there are ALL TYPES OF SUCCESSES; this is 1 of them Wink hot diggity dog!

hugs/prayers,

bettyg, leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

Previous discussions I participated in:
Sudden new allergies?
Brucellosis?
Waiting for results is so hard!

04/19/2012 10:18 AM Top

mysticthecat

Posts: 1658
Group Leader

Betty,

Grin. OK. I'll try and post it in success stories.

Thanks for the encouragement, I need it. (I just posted another post about my doubting myself.)

The family doc gave him flonase nasal spray (for post nasal drip, sore throat)

And Pepsid for stomach issues (reflux nausea)

Cat

I am not in the medical field and anything I say is simply my opinion and should not replace the advice of your doctor.

Previous discussions I participated in:
Ever wonder if almost ALL ppl may have Lyme?
Vitamin D???????
Running with Lyme?

Share this discussion with your friends:

Members who viewed this page also read:

2 weeks of doxy?
Only given 3 weeks of Doxy, should I ...
should i extend my 4 weeks of doxy?

2 weeks of doxy now extreme itching!
LLMD Athens or Atlanta, GA? Doxy her...
pain following Doxy treatment?

Lyme › Lyme Disease Forums › General & Support › educating the doctor

Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.