MDJunction - People Helping People
 

Why wear a ribbon?

  "My daughter and I both have Lyme disease" (TLCMom)

MDJunction to me

neshama48"Having Crohn's Disease for over 26 years, in the first few years, it lonely and isolating.
Though now my disease is in a near perfect remission, my friends and family are sympathetic to me, but I can not talk to them about this disease. When I stumbled across MD Junction, and met others who had the same disease I was not alone in battling the disease. MD Junction is like a second family, without the judgement or guilt of having Crohn's Disease, but they do give you love and support.
" (neshama48)

more testimonials
Lyme Disease Support Group
A community of patients, family members and friends dedicated to dealing with lyme disease, together.
Join This Group
Group Home   Forums   Articles   Members (7966)   Diaries   Leaders   Guidelines
Lyme Group RSS Feed
Lyme Disease ForumsGeneral & Supportneed advice for treatment starting out.
05/18/2012 07:47 PM
eoneal73
 
Posts: 26
Member

Hey David,

The others are right, don't stop the Doxy!!! If I'd known then that I was even infected....So if there is no Lyme why is the largest support group there?

I don't think anyone knows about different strains, some people call the southern version on Lyme Master's Disease. I can't think you would do anything differently... take the antibiotics until you are symptom free for at least two months, find a doc who knows what he's doing.

We are here for you, bud!

Reply

05/18/2012 09:41 PM  Top
JoniC
 
Posts: 4
New Member

Lyme is everywhere except Antarctica!

I was scoffed at years ago when I asked a rheumatologist if I could possibly have lyme, and he said, "We don't have those ticks here in Iowa."

It's not only ticks carrying lyme and we DO have them here. Grr at misdiagnosis for 15 yrs.


Previous discussions I participated in:
Lyme group leaders
anyone tried ampilgin?

05/19/2012 11:24 PM  Top
Dave78
Posts: 165
Member

Well, I wish they could see things from my persective. I would never wish anyone sickness or any ill will but we come to see doctors actually being proactive about our health. There isn't any harm in treating things just to be sure. If they had an idea how helpful it is to properly treat spirochettes early on then what's the issue. I don't know. I'm still kind of baffled about health care in the u.s. I really don't go to any anymore because I can't really afford it. Going to the indian clinic is free for me. So, it's great in that sense. But alot of it depends on what type of doctor that walks thru the door. I don't really blame them, they aren't propertly trained to treat complex problems and have a comprehensive approach to the human body. I don't view it as a problem with them personally I just remind myself that the training was lacking in some areas. It's just discouraging when they aren't receptive to what I am asking them. Definitely an imperfect system and it should be better. Goodnight all.

David


05/20/2012 03:58 AM  Top
Bettyg
 
Posts: 27274
VIP Member
I'm an Advocate

hi dave,

please break up your solid block text so we neuro lyme folks can read all of it too. please use my below posting guidelines; thanks for helping us HELP YOU Wink

bettyg, iowa activist

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

Welcome to MD JUNCTION! I'm so glad you found us! You’ve come to the right place for education and support!

Private messages DELETED in 30 days!

ARCHIVE, upper right!

My WELCOME LETTER is posted at the top of SUPPORT FORUM in sticky pin full of good info and HYPERLINKS ready to be read.

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

The most important things are at the top; MUST READ and print off as mentioned there already to start your lyme/co-infection journey with us all.

The 1st things to do are:

• JOIN LYME BOARD;

• Post in LLMD REQUEST FORUM for a LYME LITERATE md; see my welcome letter and the INSTRUCTIONS there if you are SPECIALLY FROM CALIF. Where it’s broken down into 8 NAMED AREAS.

• You’ll need to give me my calif. NAMED area where you live in the areas shown there in SUBJECT LINE plus if it’s for ADULT or a child; we need age of CHILD; some llmds have AGE restrictions.

• OTHER STATES will show the SPECIFIC NAME OF THEIR STATE and Qclosest, largest city to them in SUBJECT line plus adult or child; UNDER 21; we need their age!.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

• Also, we’ll need the following info in your request post:

in your llmd request, please EDIT and add more info ok.

Are you UNDER AGE 21;; if yes, I need your age shown as some of our llmds have AGE RESTRICTIONS; thanks!

how long you've been sick

if you've tested for lyme/co-infections;

which labs doing work for which specific test, etc.

did you have western blot igm/igg done by igenex?

if yes, what were the POSITIVE & INDETERMINDED numbers; NOT negatives.

thanks for understanding; just EDIT your post. you can find all by going to left MY DISCUSSIONS, click on it.

after you add more, a LEADER will send you names ok.

I RECENTLY RETIRED AFTER 6 LONG YRS. OF DOING THIS!

Betty’s suggested posting guidelines:

NO ALL CAPS POSTS; they are illegible to me/other neuro folks!

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 42 yrs. neuro chronic lyme, so we are UNABLE to comprehend and read. Thank you for helping us help YOU 

Please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX per paragraph and hit ENTER TWICE to double space between each paragraph. We’ve lost our comprehension skills to read solid block text.

We neuros lose our train of thought if the sentence is broken up in the middle; so please keep an ENTIRE sentence together as ONE. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit

ENTER key twice after each paragraph.

Go to left hand corner; click edit send. Then go to bottom and click SUBSCRIBE TO THIS DISCUSSION.

Thank you for posting in a manner that makes it easier for all to read and help others.

Bettyg, Iowa activist FOREVER Wink

YES, be prepared to PAY UPFRONT!

i've heard of some requiring down payments; i wasn't aware of that one at all!!

very FEW accept insurance; why?

insurance co. allow 7 min. per patient; we can hardly say hello in that time!

you also have to follow INSURANCE'S GUIDELINES ON TREATMENTS, IDSA/infectious disease drs. socieity guidelines... BAD NEWS FOR US!

by NOT accepting insurance, they can practice ILADS/intl. lyme and associated disease lyme guidelines ... treating you longer than 4 wks. of antibiotics, herbals, and alternative therapeis.

they allow 30-60 min. appt; longer 1st time; you pay accordinatelly for those appts.

ACCEPTING INSURANCE; they get very little $$ to pay the staff/overhead of building/utilities, etc.

many call patients day before to make sure they will be there; MANY DO NOT SHOW UP NOR HAVE THE DECENCY TO CALL SAYING THEY ARE NOT COMING!!

they could get those close by to come in but NOT being called; they are OUT THE MONEY and having one hell of a time meeting the bills.

our LLMDS are NOT RICH by any means!!

i hope this answers your questions so you understand what THEY are going thru too.

hugs/prayers,

bettyg, iowa activist forever

***

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:
LLMD near St Louis needed
I'm pregnant.

05/20/2012 12:18 PM  Top
VicMac
VicMac  
Posts: 1653
Senior Member

Dave, sorry for the disgusting and annoying delay here on my part! Every sort of distraction occuring.

PMing you the info I mentioned.

Here is also the website:

http://www.ldsg.org/

Post edited by: VicMac, at: 05/20/2012 12:48 PM

I wish I had solutions for everybody here who is suffering, but I am still hunting for them myself and seem to be more of a student on this board than a teacher. All I have to offer is my experience, support, and prayers based on what I have learned in my recovery. I am not a physician.

05/20/2012 05:18 PM  Top
Dave78
Posts: 165
Member

Hi Vicmac,

There isn't a delay and no need to apologize if there was one. I understand that people with health problems can only do so much.

I don't know your level of health but I know I fall into that category. Thank everyone for all their help.

David

Reply

Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 Next > End >>

LymeLyme Disease ForumsGeneral & Supportneed advice for treatment starting out.

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.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved