MDJunction - People Helping People
 

Why wear a ribbon?

 
"Husband recently diagnosed with Lyme Disease." (Samantha8610)

MDJunction to me

carmen33"When I first came to MDJ, I was in a very dark place, and feeling quite alone, I don't know how I found this site, but I have been very grateful ever since, all of you have offered insight to the illness of Bipolar and the other things going on with me, being here has allowed me to find friends, and to feel safe in discussing things that I would never have shared before.

I believe it has also offered me the chance to reach out and help others. A simple Thank you, is all that I have to offer, to this site and to the wonderful people here.
" (carmen33)

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 (7813)   Diaries   Leaders   Guidelines
Lyme Group RSS Feed
Lyme Disease ForumsGeneral & Supportfinally got my results...but dr hasnt called back
10/08/2010 08:50 AM
bjbonner1
Posts: 11
New Member

ok so here it is, antibody results say 1.12 and at the bottom of the page it says greater than 1.10 is positive...so it says high in the margin- looks to me to be a positive on the antibody screen, so theres the number one clue....

second western blot...

I had a positive 41 igg and a positive 23 igm...both for B. burgdorferi. so am i right in assuming I am positive? becuase then i read that if you arent getting more than three bands positive you arent officially positive?

but this makes no sense to me because what I dont understand is why is anyones body making antibodies to a spiroches that we shouldnt have in our bodies, if they are infected???

can anyone please help me with this, if my doc doesnt call me back I think I will go crazy! my mind is going, my husband even said it the other day! I am having some memory problems, I am very tired all the time, my back hurts so bad I cant stand up for more than 30 minutes most days and I always feel like I am coming down with a flu???! I assume that is from the lymes, it would be so great to get rid of it!!

JP

Reply

10/08/2010 03:15 PM  Top
bjbonner1
Posts: 11
New Member

well I found out why my dr didnt call me back, she thought for some reason that I had lymes in the past and said that I would alway have a positive titer? why would she have even have done the test then?? anyway, after i spoke with the nurse, I told her that no i have never had it, and she had the dr talk to me, and she said yes I did have a positive test and prescibed me doxycycline. Now what I want to know is, have others had a good result just by taking oral antibiotics? I think I have had it for at least 6 months, probably more like a year.

JP


Previous discussions I participated in:
iv or oral antibiotics??

10/08/2010 03:48 PM  Top
Supermom2
 
Posts: 269
Member

bjbonner1,

First, I highly recommend you go to an LLMD.

You don't mention being tested for coinfections, how long your doctor intends to keep you on antibiotics, or if he gave any additional instructions, like dietary changes or supplements.

If you have a doctor who is only following IDSA/NIH/CDC guidelines for the treatment of Lyme it is likely they will treat with antibiotics for only a short duration, and won't consider many of the elements of Lyme treatment that an LLMD or ILADS doctor would.

It's sad that Lyme treatment has become a matter of politics but it's true.

If you do stay with the same doctor, you need to spend some time educating yourself regarding Lyme treatment.

You'll need to become your own advocate, and discuss some of these things with your doctor.

I was on doxy before I was bit for other reasons, and for two years after.

I was dx'd with severe Lyme plus 2 coinfections. The doxy probably kept me from getting really symptomatic, but it didn't cure the infections.

Supermom2

Post edited by: Supermom2, at: 10/08/2010 03:50 PM


10/08/2010 06:24 PM  Top
bjbonner1
Posts: 11
New Member

Yes, my dr only gave me doxy for 2 weeks. no other testing no other instructions. I already have a chronic pain condition from a bone infection that I got from a dr that gave me an e. coli infection from a steroid injection....so I was thinking when I first started feeling bad it was par for the course but it has gotten worse. I see my specialist on tuesday- she is a pain dr/ortho so I will see what she says. I happened to talk to my mom today and she told me there is a lymes clinic near her! she only lives about 45 minutes away! I will find out if my insurance will pay for it, even if they dont, it may be worth it to go, my ortho will probably recommend me for it and my dr will have to send me then. I believe I have probably had it for a while. My dog was treated for lymes back in the beginning of the summer and we dont know how long she has had it but she jumps up in bed with me when my husband leaves for work and i found a bunch of ticks on me and stopped her from doing it. back in the spring I found one in my scalp and I still have a scab there that wont go away, I started having increasing symptoms after that. I would think that 2 weeks on doxy wouldnt do anything!??

JP


Previous discussions I participated in:
iv or oral antibiotics??

10/08/2010 06:55 PM  Top
waxby
waxbyPosts: 4108
VIP Member

~~~Hello JP,

~~~Stay away from non-LLDrs,it is already clear that you are on

the road to head banging.Steroids made you worse.

~~~You are Lyme positive and two weeks of abx is a sure sign your Dr is clueless.

~~~You need to be on abx at least two months past NO symptoms before stopping.

~~~You have embarked on the endless circle of specialists.The only specialist

you need now is a LLDr(Lyme Literate Dr).

~~~Don't make me come over there!

```````~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Mitchell~~~

Post edited by: waxby, at: 10/09/2010 10:36 AM

~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell

10/09/2010 07:16 AM  Top
bjbonner1
Posts: 11
New Member

Is there a network to find a LLMD? I wonder if I should just make an appt at the clinic my mother told me about and start there or see if I can find an LLMD in my network first. Has anyone actually found one that was in there insurance network?? I wonder since this is a large clinic if insurance would pay for it.

Jen


Previous discussions I participated in:
iv or oral antibiotics??

10/10/2010 12:00 PM  Top
Supermom2
 
Posts: 269
Member

bjbonner,

Go to Forums - LLMD request and post a msg with subject like "Need LLMD in [list nearby states]"

One of the board leaders will private message you a list.

supermom2


10/11/2010 06:35 AM  Top
bjbonner1
Posts: 11
New Member

thank you!!!I do need a list!!

jp


Previous discussions I participated in:
iv or oral antibiotics??

10/11/2010 09:53 AM  Top
lindaca
 
Posts: 1009
Member

Many llmd's don't take insurance, but you may find one that does. If not, go to the clinic near your mom's, not to a regular doc who is ignorant about lyme.

10/11/2010 10:38 AM  Top
bjbonner1
Posts: 11
New Member

never mind, I found it, thanks!!

JP


Previous discussions I participated in:
iv or oral antibiotics??
Reply

Health Topics: lymes results
Share this discussion with your friends:
Members who viewed this page also read:

LymeLyme Disease ForumsGeneral & Supportfinally got my results...but dr hasnt called back

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