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Old 08-28-2007, 12:50 PM   #1
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I can't believe this.....

I called my LLMD today to see if they got my results and the nurse said that I really have to come in and get started on treatment, my test came back POSITIVE!!!! I am so happy that I finally know what is wrong with me. I started crying to the nurse on the phone, I told her that I am so relieved to finally find out what is wrond with me. She said "trust me, we hear that often". I asked her what bands came up positive and she said the following....

Bands-23,25,31,34,39,41,83 and 93. IGg she said that my western blot had just as many positive bands!!!

Ticker can you explain these bands to me?

If I were to listen to all the neuologist that said that all my symptoms are "normal stuff" I would probably be in BIG trouble. I knew something was wrong with me even tho nobody would listen!!!

Crying tears of joy,
J

Last edited by 3love; 08-28-2007 at 12:55 PM.

 
Old 08-28-2007, 01:26 PM   #2
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Re: I can't believe this.....

3love, I'm sitting here crying for you! I truly have tears of joy. Thank God. I am so happy for you. you actually made my day. I talked to my doc. this morning. He did not have the results. So I talked to IgeneX and doc. office. They should be able to get them faxed TODAY. Pretty good news for me. Baby steps.
Congrats 3love

 
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Old 08-28-2007, 01:38 PM   #3
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Re: I can't believe this.....

mc, thank you for your kind words I still can't believe it! I don't remember being bitten or a rash. I actually called the office back to make sure it was my file that the nurse was looking at, she politely laughed and said "yes, I'm sure it is you".
I told her that I just can't believe I found out (on my own) what I had. My husband has a bunch of symptoms also! He has had it for much longer than I have, maybe 12 plus years! I truely think that you can get it from your spouse.

I wish you get your results already!

J

 
Old 08-28-2007, 01:44 PM   #4
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Re: I can't believe this.....

I agree 3love. I think it can be transmitted sexually. Will your husband get tested now? Was it a LLMD who ordered the tests? Also, what about kids? Do you have any children with symptoms? take care. mc

 
Old 08-28-2007, 02:09 PM   #5
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Re: I can't believe this.....

Wow that is what I am going through now! Could you please tell me your symtoms and if you have Pars Planitis in your eyes?

 
Old 08-28-2007, 02:09 PM   #6
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Re: I can't believe this.....

mc, my husband has agreed to get tested but he thinks that lyme is not a big deal. He thinks that he can live with it. He can be so stubborn sometimes, it drives me nuts! I try to explaint o him that it is not a disease you can take lightly. I will have my kids tested aswell.

later,
J

 
Old 08-28-2007, 03:39 PM   #7
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Re: I can't believe this.....

Hi J, congratulations on getting diagnosed! I think we all understand what a relief it is to have validation for your symptoms.

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

The IgM tests for a more recent infection and the IgG a longer standing one. I don't which one you have the bands on but you can post when you get a copy.

Band 41 is often the first to show. Bands 23-25, 31, 34, and 39 are Lyme specific bands. All of these are positive on your test, so yes you definitely have Lyme!

When will you see the doctor? Good luck!

 
Old 08-28-2007, 03:54 PM   #8
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Re: I can't believe this.....

Julia!!!!!!!!!!

I am so happy for you!!!!!!!!!!! You know my story is so similar to yours- docs thinking MS but not quite - stuck in limbo land and then finding Lyme ON YOUR OWN! It is such a shame that people have to do their own investigating before they can even consider Lyme most of the time.

Congratulations and best of luck with your treatment. what do they have you on? Do you have any co-infections?

 
Old 08-28-2007, 06:59 PM   #9
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Re: I can't believe this.....

Thanks ladies! Ticker~ the nurse gave me the bands for the IgG, so I guess I have had this lyme for a long time?!!! She also said that my western blot had just as many positive bands! I sure will post the bands when I get a copy, my appointment is on thursday.

Zand~I am so happy you would not believe! It's weird how happy a person can get over a diagnosis of a terrible disease right?!! But, It feels so good to finally know what's wrong with me. It sure is a shame that we have to research and dx ourselves isn't it?!! Even after I told the last neuro that I would like for him to test me for lyme, he just answered me back with.."you do not have lyme, you don't have the history for it". He didn't even spend more than 5 minutes with me!!
I don't know if I have any co-infections, not on any treatment yet. I will discuss all that on thursday. How are you doing?

Later,
J

Last edited by 3love; 09-01-2007 at 10:47 AM.

 
Old 08-28-2007, 07:13 PM   #10
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KeyLyme HB User
Re: I can't believe this.....

Congrats!!!! I'm so happy that you finally have some answers. Since you have a very positive test, are they going to put you on a PICC line?

 
Old 08-28-2007, 07:45 PM   #11
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Re: I can't believe this.....

Thanks Keylime, I don't know yet, we will talk about my treatment on thursday.


Later,
J

 
Old 08-29-2007, 04:47 AM   #12
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Re: I can't believe this.....

Hi J-

I am not doing great. Had a reaction to my treatment and had to stop. Going to try another next week. Having reservations about my LLMD and trying to get info from a support group in my state but not getting results there either.

I am trying something really weird in the alternative medicine line. I will post in another thread about that.

 
Old 08-29-2007, 05:58 AM   #13
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Re: I can't believe this.....

Zand~I'm sorry to hear that your not doing well. What's up with your LLMD? Not happy with him? If he is not up to your expectations, find someone else. I'm sure you know, your health comes first!

Take care,
J

 
Old 08-29-2007, 06:33 AM   #14
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Re: I can't believe this.....

zandvoort, what kind of reaction did you have?

 
Old 08-29-2007, 07:33 AM   #15
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Re: I can't believe this.....

Hi Ticker-

I actually had a multitude of things going on.
for about 2 days- 103 temp
could not move neck
congested
sore throught
cough
very weak- could not get out of bed.

On top of that, I got hives all over my body, starting at the trunck. They were not very itchy.

This started on Sat and my LLMD not avail on weekends. My son had a bout with something the prior week, 103 temp, etc so I do not know if I was herxing or caught his thing. I had been taking the meds about 11 days when it happened. I kept on the meds till Monday and LLMD said stop and suggested I go to my GP to see if hives looked like allergic reaction. GP said yes and did CBC w/diff. Results went to LLMD who said probably an allergic reation. The hives were not that itchy which I was told is another sign it is a med reaction.

what do you think? does it sound like herx or reaction or what? I never had a lyme rash so I do not know what they are like.

Thanks for the help!

Last edited by zandvoort; 08-29-2007 at 07:34 AM.

 
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