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Lyme Disease
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Posted 1/29/2013 3:11 AM (GMT 0)
Tomorrow is the day guys, I go in to see the LLMD and pray that I get some guidance, some help and some hope back that I have lost... Please keep me in your thoughts. I will update tomorrow evening. And, yes, I wish some of you were my neighbors. No one near here understands what I'm going through and what I'm about to go through with a herx. I know...because I felt it 3 years ago when my bacterial load was...well 3 years less, so like what a couple trillion less? Anyone feel like moving to Delaware, just hit me up!
Posted 1/29/2013 3:45 AM (GMT 0)
Good luck! Can't wait to hear all about it!
Posted 1/29/2013 3:48 AM (GMT 0)
Opugirl,

Our thoughts and prayers are with you!

Don
Posted 1/29/2013 4:06 AM (GMT 0)
We are your neighbors in spirit, opugirl!

Lots of positive healing vibes coming your way. May it be everything you need.

Nan
Posted 1/29/2013 5:28 AM (GMT 0)
Spirit neighbor here too!! Good luck..
Posted 1/29/2013 12:21 PM (GMT 0)
Good luck Opugirl!
Posted 1/29/2013 2:19 PM (GMT 0)
Good luck and looking forward to your update with the LLMD.

Patty xo

Posted 1/29/2013 4:28 PM (GMT 0)
NO doubt, I wish I had some of u as my neighbors, we could have our glutten free lunch and dinner together. :) hee hee

we could crawl to another's house and it would be understood.... :)

Best wishes for the day, swooosh of good vibes sent your way indeed!
Posted 1/29/2013 6:36 PM (GMT 0)
I would be your neighbor any day!! :-) Here's to hoping you have nothing but the most wonderful news to share with us today (or tomorrow) about your visit!

We used to joke around on this forum years ago about having a deserted island we could claim and all of us Lymies would live there, helping each other get through all of this!! Still sounds like a good idea to me!! LOL!! turn
Posted 1/29/2013 10:27 PM (GMT 0)
I am sort of close- I live in Northern VA...can't wait to hear about your Dr.'s visit today. This is such a great support group...
Posted 1/29/2013 10:45 PM (GMT 0)
Thinking about you, I can't wait to hear about your appt! :)
Posted 1/30/2013 12:08 AM (GMT 0)
Wish I could say it went well but now I am just confused. The doctor said nothing really. He said he wanted me to stay on the doxy especially since I confirmed that it has helped and then he ran bloodwork for Igenix...didn't mention anything about Lyme though or Bartonella or coinfections....but then on my sheet it said diagnosis Lyme disease. I have to wait another 3 weeks....ugh what a bummer. My heart kind of sank when he mentioned igenex and I asked if it isn't positive if he will not treat and he looked me in the eye and said no, that isn't what it means but darn... I at least wanted something to take home...
I said that I got the doxy offline...do you think that sparked a red flag and he wouldn't want to help because of that??But then again he told me to keep taking it...POOP! Anyone else have an experience like this the first time they went to LLMD???
Posted 1/30/2013 1:00 AM (GMT 0)
opugirl, what blood tests did the doc order? Maybe he is testing for co-infections, too? I believe he is doing the right thing at the moment. He wants more info before pressing forward. My first visit to my LLMD ended with me taking clindamycin only for 2 months until he added another antibiotic. He heard you say you were doing better on the doxy. I think you will find that your 2nd visit will go better. You need to write a list of questions for your next visit and hopefully he/she will be able to answer them. Chin up. By the way, I think that my LLMD wouldn't say 2 words to me if I didn't ask questions BUT I am feeling much better.

Patty xo
Posted 1/30/2013 1:33 AM (GMT 0)
opugirl, my first appt. w/ the LLMD was similar. He didn't start any form of lyme treatment and didn't provide any idea of diagnosis and ordered the IGENIX western blot. He did tell me that I was sick and that something was wrong, but didn't elude to Lyme. I had an appt. w/ him the day after my results came back and he provided a lot more info. and started me on heavy lyme treatment.

Summer is right, he's probably trying to get more info. to know how to treat.
Posted 1/30/2013 1:33 AM (GMT 0)
Just the regular lyme test and I requested the Bartonella test but only the basic. They said on the phone though that he treats patients that he doesn't accept insurance for on certain days so he knows their financial situation is a little bit different.
Posted 1/30/2013 1:35 AM (GMT 0)
Did both of you have positive WB's?
Posted 1/30/2013 6:00 AM (GMT 0)
opugirl,

Our first LLMD also did not start treatment until the Igenex test results came in. She let us know that her license was on the line and that she has to be very careful. We understood where she was coming from. On the other hand, we were very anxious. The WB test results turned out to have only 2 positive bands, but she then started treatment anyway.

Don
Posted 1/30/2013 6:18 AM (GMT 0)
I'm sorry opugirl! That's very frustrating. But I'm confused, where are you getting the doxy? If you don't have an Rx and need one I would call the LLMD's office and make sure you get one. Especially considering he told you to keep taking it!

I guess maybe he's being cautious until he can see your test results, but very frustrating that he didn't offer more info, nonetheless! When do you see him again?

I have one week until my appt. and I've been waiting months. So I can totally understand your frustration here!!

My WB was negative (only one positive band-39).

Did you have a positive WB at some point?
Posted 1/30/2013 7:30 AM (GMT 0)

Opugirl,

First time I went to see my Dr, I came out of his office, stepped into my car and started crying like a small child (for the next 30mins)...
I was so disappointed, but being his patient for 3 years, I came to figure out he has a plan and he knows what he's doing. He was taking my symptoms very seriously but wanted to do a whole list of tests first.

Posted 1/30/2013 2:50 PM (GMT 0)
I realize how frustrating it can be to wait like that, but please remember these doctors are under constant attack and the ever watchful eye of ins. companies who are just waiting for these wonderful doc's to step just over the line so that they can haul them into court and do terrible damage to their reputations and practices. So the ones who move slowly - although it's terribly frustrating for us - they are only hoping to protect themselves a bit.

In the mean time, you know that you can continue to take the Doxy, right? and you know that you need to be detoxing, eating very healthy and resting whenever you get the opportunity. Hang in there!! It sounds like you have a very understanding doc!
Posted 1/30/2013 7:36 PM (GMT 0)
Praying for you!!!
Posted 1/30/2013 9:16 PM (GMT 0)
Hi opugirl,

I tested positive on a Western Blot test in 2008 through Quest labs and took 2 months of amoxycillin and thought I was fine. This past summer I knew something was majorly wrong because I was experiencing extreme fatigue, air hungar, constant cough and anxiety amongst a host of other symptoms. I ordered the kit from Igenex and had my GP fill out the order form and sent it to Igenix and it came back positive again. I then made an appointment with a LLMD in southern Jersey and have been in treatment since Sept.

You will get better. Patience is a virtue with this disease, that's for sure.

Patty xo
Posted 1/30/2013 9:36 PM (GMT 0)
I've only had negatives...so that is why I'm concerned.

Also, the LLMD said well if it is Lyme we will get you correct treatment but nothing else. I'm just so scared I'll wait another 3 weeks to have him tell me lets wait another 5 months and test you again.

Post Edited (opugirl) : 1/30/2013 4:26:36 PM (GMT-7)

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