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I posted about a week ago to say that the doctor had called to say I was lymey this is what my husband and I jokingly say e.g. I'm feeling lymey today). Monday I saw her and she went over the details of the results with me. I'm not totally convinved, but this may just be because I've already had so many inaccurate diagnoses - M.S., transverse myelitis, etc. Some great folks told me the difference between igg and igm on my last post. I'm posting the specifics now hoping that some wise, sage person will make some sense of them for me. I've elected to hold off another 3 weeks on the iv rocephin that the dr. initially wanted to put me on. She said there is no completely definitive way to prove that this is lyme, but that we can leave me on oral abx 3 more weeks and then test to see if I have even more positive bands. Here's the data:
IGG:
Everything neg except 41 ++ and 34 +
IGM:
Everything neg except 30 +, 23-25 IND, 34 IND, and 39 IND
Help?
[QUOTE=lizzie518;2944952]I posted about a week ago to say that the doctor had called to say I was lymey this is what my husband and I jokingly say e.g. I'm feeling lymey today). Monday I saw her and she went over the details of the results with me. I'm not totally convinved, but this may just be because I've already had so many inaccurate diagnoses - M.S., transverse myelitis, etc. Some great folks told me the difference between igg and igm on my last post. I'm posting the specifics now hoping that some wise, sage person will make some sense of them for me. I've elected to hold off another 3 weeks on the iv rocephin that the dr. initially wanted to put me on. She said there is no completely definitive way to prove that this is lyme, but that we can leave me on oral abx 3 more weeks and then test to see if I have even more positive bands. Here's the data:
IGG:
Everything neg except 41 ++ and 34 +
IGM:
Everything neg except 30 +, 23-25 IND, 34 IND, and 39 IND
Help?[/QUOTE]
Lizzie, she diag. you with LD because your 41 kDa is ++ and the 34 is + on your IGG, these are double starred bands, with the 41 ++'s you definately have LD
plus your IND's on the IGM are all double starred bands. I know that your report says neg. by Igenex and CDC but that is just a protocal that they use for reporting purposes, it is not used by the LLMD's to diag. LD. 41kDa is a lyme speciifc band it wouldn't be positive if you didn't have it and you have ++, she knows what she is doing, trust her. My report is neg. by CDC and Igenex also and I was seeing Dr. Steven Phillips who used to be the pres. of ILADS and he diag. LD, then Friday I went to see Dr. S. and she agreed with Dr. Phillips on the diag. of LD. And agreed to treat me with the same ABX's that he prescribed. Also my neur. looked at the results and agreed with the LLMD's that I have LD. I know it is confusing but you can't go by the CDC, you have to trust your LLMD. If you need a second opinion call DR. Forresters office in Pineville LA, you will have to get on a 4 month waiting list to see him, but I can guarantee you he will agree with Dr. S. Don't stop taking your ABX's. You know you herxed and that is a classic sign too. How are you feeling now? Hang in there! Did Dr. S. keep you on Ceftin or did she change the ABX's up? Ceftin wouldn't be my first choice for LD. Did she mention Doxycycline and Flagyl? Or just suggested IV Rocephen. She also asked my if I wanted to try IV Ro. but I told her no. Good Luck and we are here for you! :)
I'm glad, Sarah, that you got in to see Dr. S. and it went well for you. I know I'm positive, I just have periods of doubt that I really finally have a firm diagnosis. I am taking my labs to my nuerologist on Fri. to have him look at them too. If he says I'm +, I'll call Dr. S.'s office adn tell them I'll go ahead with the IV R. She kept me on Ceftin and also has me taking a little ATP tab necause my ATP is low and she said that could help me with energy. It actually has helped a little bit. Oh- and I am actually positive according to Igenex. Just not CDC or NYS (whatever that is). Who is your nuerologist?
Lizzie
[QUOTE=sarah92202;2945100]Lizzie, she diag. you with LD because your 41 kDa is ++ and the 34 is + on your IGG, these are double starred bands, with the 41 ++'s you definately have LD
plus your IND's on the IGM are all double starred bands. I know that your report says neg. by Igenex and CDC but that is just a protocal that they use for reporting purposes, it is not used by the LLMD's to diag. LD. 41kDa is a lyme speciifc band it wouldn't be positive if you didn't have it and you have ++, she knows what she is doing, trust her. My report is neg. by CDC and Igenex also and I was seeing Dr. Steven Phillips who used to be the pres. of ILADS and he diag. LD, then Friday I went to see Dr. S. and she agreed with Dr. Phillips on the diag. of LD. And agreed to treat me with the same ABX's that he prescribed. Also my neur. looked at the results and agreed with the LLMD's that I have LD. I know it is confusing but you can't go by the CDC, you have to trust your LLMD. If you need a second opinion call DR. Forresters office in Pineville LA, you will have to get on a 4 month waiting list to see him, but I can guarantee you he will agree with Dr. S. Don't stop taking your ABX's. You know you herxed and that is a classic sign too. How are you feeling now? Hang in there! Did Dr. S. keep you on Ceftin or did she change the ABX's up? Ceftin wouldn't be my first choice for LD. Did she mention Doxycycline and Flagyl? Or just suggested IV Rocephen. She also asked my if I wanted to try IV Ro. but I told her no. Good Luck and we are here for you! :)[/QUOTE]

Sarah,

I didn't know you were seeing Dr. Forester? I see him too! Isn't he a great doctor? I love how he listens and is willing to try anything. My IGM positives were 18++, 39 IND, 41 +, 58++, 83-93 IND

My IGG positives were 30 +, 41 ++

Dr. Forester thinks I have Lyme too or a co-infection. I am taking 500mg of Levaquin right now since I tolerated that one the best. I have high liver enzymes so we agred that we need to be careful.

Are you doing the flu vaccines too? I've been doing them for about a month and my brain fog has gotten so much better. When do you see him again?

It's nice to know someone else that's seeing him.

P.S- If Lizzie gets a doctor referral, she will be able to get in sooner.

Chantel
[QUOTE=ktp812;2945290]I was wondering if anyone can interpret my IgeneX results also. I keep having serious doubts if I actually have LD. I also have Adrenal Insufficiency. My test was done back in November.
IGG
31 IND
39 IND
41 +++

IGM
23-25 IND
39 IND
I was considered negative from both CDC and Igenex. I have been on antibiotics since November and definately herxed very badly. I don't know why but I just am not sure. I don't think the doctor would have me on all these abx's if I didn't have Lyme. Any ideas?
Kim[/QUOTE]

That is considered a negative western blot. However, if you re-tested 4-6 weeks after being on antibiotics, you are likely to see those IND's turn to + or even ++'s. The antibacterial effect stirs up the bacteria making it more likely to get a positive result after first starting. Herxheimers only occur w/ Lyme and Syphillis. Did your doctor say you herxed?? You most likely do have lyme then.

My results from Stonybrook Lab, Igenex and Medical Diagnostic were about the same---and I got positive PCR, Microscopy and co-infections...so I dont doubt my diagnosis.

My bands were:

18 +++
23 +
30 +
31 ++
34 +++
39 IND
41 +++
58 IND
66 ++
83/93 ++
Hi lizzie. 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

No test for Lyme is completely reliable. Many people who have Lyme test negative. On thOn the Western Blot, the CDC requires a large number of bands to show for it to be considered positive, yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.

Band 41 is often the first to show. Bands 23-25, 30, 34 and 39 are Lyme specific bands. These bands on your test are either + or IND. I think your results are significant. Were you tested for all the co-infections?

What meds are you taking?
Hi Kim.

Hi lizzie. 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

No test for Lyme is completely reliable. Many people who have Lyme test negative. On thOn the Western Blot, the CDC requires a large number of bands to show for it to be considered positive, yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.

Band 41 is often the first to show and yours is positive. Bands 23-25, 31, and 39 are Lyme specific bands and yours are IND. It is good you are being treated.

Which antibiotics are you taking? Were you tested for all the co-infections?





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