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30 Years of Lyme Disease

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Lyme Disease
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Sue Borton
New Member
Joined : Dec 2009
Posts : 3
Posted 12/6/2009 8:04 PM (GMT -7)
Call me a veteran of LD.  Was bitten in 1979, diagnosed in 1991 and still on meds to date....Dec, 2009.

 

Not an fun or easy disease but see an infectious disease specialist regularly.  Follow proper protocols with proper doctors and followups for any and all symptoms.  Don't secondguess if you have positive tests.

 

Symptoms vary according to infection.  I have BB, babesia and traces of erlichia.

 

Live in suburbs of NYCity.  Bitten in my backyard and did not hike, bike or walk in wooded areas.  Only way I could have been bitten was in backyard.  Possibilities endless!

 

Alternative meds will help, adjunctive hands on therapy will help but abx only solution.  Physical activity, good counseling and supportive family a must

 

I presently have two orals going and herxing again.  They are rough and relentless.  At age 62, feel as tho I have spent my entire life with Lyme.  Good luck to everyone.

 

Westchester County, NY
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Cheezhead
Veteran Member
Joined : May 2007
Posts : 517
Posted 12/6/2009 8:28 PM (GMT -7)
Hi Sue,
Welcome to HealingWell!! Sorry you have been sick for so long. Did your ID doctor diagnose your Lyme disease?

I noticed you stated to follow proper doctors, and proper protocols, have you been on long term antibiotics?

I hope your current orals, will put your chronic Lyme into remission. What ABX have you found to be most beneficial?

Do you feel you have made significant progress from your initial date of diagnosis, to the present date? Sorry for asking so many questions, it's not often I have a chance to ask questions of someone who's been dealing with this disease as long as you have.

Best of wishes to you

Post Edited (Cheezhead) : 12/6/2009 8:35:28 PM (GMT-7)

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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 12/6/2009 8:31 PM (GMT -7)
Hi Sue,

Welcome to the forum! Sorry you have struggled for so long with this. You gave great advice though. I second guessed myself back in 2007 and didn't get treated. I was up and functioning and now I can barely walk most days. This disease only gets worse if not treated.

Are you seeing any improvement?
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Sue Borton
New Member
Joined : Dec 2009
Posts : 3
Posted 12/6/2009 9:14 PM (GMT -7)
Quick reply tonight as today has not been the kindest of days with Lyme.

I have had two picc lines.  First one with Rocephin after multiple orals, second one with Primaxin coupled with doxy.

On most all orals except a few.  Now on mino and malerone. Getting older and herxs are not easy to take.  Used to be brave and go thru any and all symptoms but now get very bedridden and exhausted from them.  (I am the sandwich generation as I take care of 88 year old parents and one surviving daughter getting married in 2010.  We lost our youngest in a car accident at age 16 in 1994.  Husband has had three open heart surgeries and survived!  I can too.)

Diagnosed after 12 grueling years of debilitation with chief of immunoligy at Mt. Sinai hospital in NYCity.

Ended up with infectious disease specialist in Westchester county same week of March 1991.

Spinal tap in 1992 at Stonybrook Hospital that confirmed antibodies to LD.

Most improvement on Ketek.  Dangerous drug however and do not advise as can cause serious liver failure and possible fatality.  However, immense relief from CNS symptoms. 

Acute liver failure after second picc in march 2000.  In hospital for two weeks but improved 100% with regular liver meds and herbal milk thistle. 

Strong advice:  seek alternative therapy in conjunction to proper abx treatment.  I travel to Buenos Aires Argentine with my husband approx 1x year.  I receive hands on therapy such as accupressure and cranial sacral management.  Superb feeling and would continue in this country but insurance does not cover. 

Strongly recommend yoga, mild exercise and restraint from sugars and alcohol.  Interferes with abx absorption.  Follow diet protocols of Dr. J. Burrascano.  Can be found on net.  He is fabulous doc on Long Island.  So much more to cover, but not now.

Read, read, read new book....Cure Unknown by Pamela Weintraub.  A must...and my bible for history of lyme.

Signing off...tomorrow is another day.  Good luck, best wishes for all our speedy recoveries and a cure for Lyme Disease.

 

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CajunGrl
Veteran Member
Joined : Mar 2009
Posts : 4717
Posted 12/6/2009 9:37 PM (GMT -7)
Sue,

Thank you for taking the time out to explain your journey with Lyme Disease. Great info!

I have Dr. Burrascano's guidelines listed in the sticky titled, "New To Lyme?....Start Here!", if anyone is interested.
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bablymers
Veteran Member
Joined : Oct 2006
Posts : 1458
Posted 12/14/2009 1:49 PM (GMT -7)
Dear Sue,

Welcome to the forum! I am sorry you have had to battle lyme for so long and my family wishes you all the best for a complete recovery. Take care, bablymers mom
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Sue Borton
New Member
Joined : Dec 2009
Posts : 3
Posted 12/14/2009 7:40 PM (GMT -7)
Thx for your well wishes.

I welcome all stories regarding one's history with LD.

It is always informational to me to learn of any complementary and legitimate protocol to help those of us with intracellular lyme.

My meds to date:  Minocycline, coupled with malarone and healthy supplements have put me in a tailspin but am persevering.

Alternative therapies next on the list.  Trigger point therapy is always a help and I have found that accupressure, if done correctly and by a professional helps to rid the body of toxins that inhibit the proper absorption of our meds.

And of course, just suiting up and showing up for anything in life is a good idea.  Many twelve step programs have this advice and it is advisable to all in any form of recovery.

Best to all,

 

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