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Old 03-05-2008, 07:22 PM   #1
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IGeneX Results - Input Please!

Hi Everyone,

My doc just emailed my IGeneX lab results and we have a phone in appt. tomorrow AM to go over them and discuss treatment protocol. It is somewhat confusing to me, but does appear I am IGeneX positive on the Western Blot IgM, but not CDC positive, which I'm sure will be an "out" for my insurance. I have 75% of the Lyme symptoms - I've been very sick for 2 years (though I believe infection was in Summer 2004) - most symptoms are neurological in nature. Anyway, to many of you experienced souls...if you have any information and input for me, it would be GREATLY appreciated!

WB IgG Results:
Band 34 IND (Indeterminate)
Band 39 IND
Band 41 ++
Band 58 ++


WB IgM Results:
Band 31 IND
Band 34 +
Band 39 IND
Band 41 ++
Band 66 +

Also, appears B Duncani Antibody Panel - Babesia IgM positive (Titer 1:40), HME Panel - Ehrlichiosis IgM positive (Titer 1:20), B. Henselae Antibody G/M - Bartonella IgM positive (Titer 1:40). IgG's were negative on all of these.

I will discuss all of this with my doc tomorrow AM....since I am in WA State, Lyme is much less common. She has treated 15-20 patients and I really like her and have confidence in her. I just also want to draw on all of your experience as well and want to make good decisions regarding treatment. Again, appreciate your help....my guess is at this point, I do have a Lyme diagnosis...don't you think? Wishing good/better health for you all. Mona

 
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Old 03-06-2008, 06:31 AM   #2
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Re: IGeneX Results - Input Please!

Hi Mona. I am sorry you have Lyme and three co-infecitons, but it is good to know so you can start treatment. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.

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
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, the IgG a longer standing one. Band 41 is often the first to show, and yours are positive. Bands 31, 34, and 39 are Lyme specific bands and yours are either positive or IND. I believe these results are significant.

The CDC requires several bands to show for the test to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are positive--some are specific for Lyme.

Let us know what treatment you will be starting. Good luck!

 
Old 03-06-2008, 07:06 AM   #3
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Re: IGeneX Results - Input Please!

Hi Ticker,

Thanks for taking the time to respond, you're so very helpful on this board and I (among many others I'm sure) really appreciate it. This is all a big learning curve for me, but am reading a great deal to try to get educated. I wish I didn't have to battle this beast, yet at the same time, after feeling so sick for so long with no answers or help, it's somewhat of a relief to at least know what the problem is and to hopefully have a plan in place to start addressing it - the typical scenario of a Lyme patient, doctor to doctor with no diagnosis. From what I've read on this board, the web, books etc., it appears to be a long road in the efforts of recovery. Reading about herxing and the like is very frightening to me...but, living like this with no diagnosis or attempts to help me ever get better is even more scary. I guess that's where my sense of relief comes in!
After I consult with my doc, I would like to post the protocol she has me starting, just to get feedback if people think it's on track. I really value the insight from folks who have "been there" or "are there." Again, thanks for your input and support. Mona

 
Old 03-09-2008, 12:51 PM   #4
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Unhappy Re: IGeneX Results - Input Please!

I have recently been diagnosed with Chronic Late Stage Lyme per Dr. Ryser in KC as my Medical Diagnostics Western Blot results showed the following:
Yersinia IgA two bands from: 51, 44, 41, 37, 35, 33, 23
Yersinia IgG two bands from: 51, 44, 41, 37, 35, 33, 23
Only the 35KD band with intensity 90%> Equivocal
Bordetella pertussis treated with Bactrim DS as one or more bands: 220, 28kD
IgG for above.
She is planning on treating me for .009 Thallium heavy metal toxicity with Prussia Blue for 3 months ($1K per/mo) and then attack the Lyme with two antibiotics for five months. (Not specified)

I am down $10K for the diagnostic labs and SPECT scan rejected by United Healthcare as not medically necessary, and given five independent sources both patients and physicians have noted several law suits against Dr. R. for being scammed and not having positive clinical outcomes, I'm meeting tomorrow to discuss whether I want to pursue with her any longer. My wait for Dr. Brewer is another nine months. My daughter is 11 and has been suffering from neurodevelopmental delays on the autistic spectrum and I suspect she has Lyme induced autism and needs help as well.
I have prayed and pondered where to turn and who to trust. Can Ticker or anyone seasoned who has been down this road advise me as to what seems reasonable based on my results?
I have been taking Diflucan for two months and have had huge dieoff of fungus and the Lyme symptoms, burning itching tingling skin, myofascial pain and all my Fibro and CFS symptoms seemingly going away. Do I wait and go with a doc that has skeletons in the closet, or believe this Dr. R in spending alot more $$ for what I'm not sure is medically necessary. Help anyone!
Kay of KC

 
Old 03-11-2008, 11:46 AM   #5
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Re: IGeneX Results - Input Please!

Quote:
Originally Posted by stuey06 View Post
I have recently been diagnosed with Chronic Late Stage Lyme per Dr. Ryser in KC as my Medical Diagnostics Western Blot results showed the following:
Yersinia IgA two bands from: 51, 44, 41, 37, 35, 33, 23
Yersinia IgG two bands from: 51, 44, 41, 37, 35, 33, 23
Only the 35KD band with intensity 90%> Equivocal
Bordetella pertussis treated with Bactrim DS as one or more bands: 220, 28kD
IgG for above.
She is planning on treating me for .009 Thallium heavy metal toxicity with Prussia Blue for 3 months ($1K per/mo) and then attack the Lyme with two antibiotics for five months. (Not specified)

I am down $10K for the diagnostic labs and SPECT scan rejected by United Healthcare as not medically necessary, and given five independent sources both patients and physicians have noted several law suits against Dr. R. for being scammed and not having positive clinical outcomes, I'm meeting tomorrow to discuss whether I want to pursue with her any longer. My wait for Dr. Brewer is another nine months. My daughter is 11 and has been suffering from neurodevelopmental delays on the autistic spectrum and I suspect she has Lyme induced autism and needs help as well.
I have prayed and pondered where to turn and who to trust. Can Ticker or anyone seasoned who has been down this road advise me as to what seems reasonable based on my results?
I have been taking Diflucan for two months and have had huge dieoff of fungus and the Lyme symptoms, burning itching tingling skin, myofascial pain and all my Fibro and CFS symptoms seemingly going away. Do I wait and go with a doc that has skeletons in the closet, or believe this Dr. R in spending alot more $$ for what I'm not sure is medically necessary. Help anyone!
Kay of KC
Hi Kay:
I can only give you my personal experience with Dr. R. Five years ago, I first went to her because I was having severe stomach issues- primarily IBS in nature. she was able to determine that through high use of antibiotics and steroids for a sinus infection that I had a candida overgrowth in my gut. She treated it and I got better. Eventually I was able to resume eating yeast products.

In December 22, 2006, I came down with very severe flu like symptoms. My GP thought I had a sinus infection - gave me two weeks of antibiotics. I went to another Dr. in a couple of months because I was not getting results, he thought I had I might have MS. After 4 months, I found a holistic Dr. who did a lyme western blot which game back positive for one band of lyme. She put me on doxycycline, I started feeling better after each herx, but it was slow.

I went back to Dr. R on August 1, 2007. She ran all the tests, and treated me with oral antibiotics. I am fortunate in that I caught this a lot earlier than most and my CD57 score was already 72 (up from 64 in June) by August 1.

I have been on her treatment for 6 months now - I am not in remission, but doing MUCH better. I grade my progress daily on how functional I feel, and my monthly functional average has gone up from 80% in August up to 94% in February.

We are now treating me for bartonella - it looks like I have that one coinfection. Most of my lyme symptoms are gone -I don't have fatigue anymore, no joint pain unless herxing, etc. I just have what I call '2 drink brain fog' on some days.

Dr. R is very expensive, that is true. And I am sure some have not had success. I have been told by her that I have 3 to 6 months left of treatment.

So, I hope that helps some.

 
Old 03-13-2008, 05:22 PM   #6
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Re: IGeneX Results - Input Please!

Mona, sorry to hear that you are so sick, I am glad that you have found an LLMD in WA st. Can I ask who this doctor is? I am trying to get my mom to an LLMD in WA, she lives in Oak Harbor, and she has mentioned to her doctors the possibility of Lyme and they blow it off and say there is no Lyme Disease in WA ST. Don't believe this nonsense. Vancouver BC could not have the highest incidence of LD in all of Canada, and the pac NW not have any. Ticks do not know boundaries. There just are not knowledgable doctors that are willing to learn about this terribly misdiagnosed disease and label people with either CFS, Fibro, or some type of psychological disorder. I am so glad that you have found someone who knows what they are doing. Let us know what she puts you on, and how your progress is doing. Sincerely Sarah

 
Old 03-14-2008, 07:12 AM   #7
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Re: IGeneX Results - Input Please!

Hi Sarah,

Sorry to hear your mom is struggling. I know...the doctors totally dismissed Lyme with me too. I started to doubt myself. At one point I just gave up seeing any docs and trying to get help, just hoped it would go away (it didn't!).

Anyway, I am seeing Dr. Laurie Marti M.D. in Bellevue, WA. She tested me for everything under the sun. Some red flags popped up for Lyme so she then did the IGeneX testing at that point. She believed my symptoms and believed I was sick, more than any other doctor I had seen. Also, I have heard Dr. Amy Derksen N.D. in Bellevue, WA is also good. If I don't respond as hoped with my abx therapy I just started, I may consult with her too just to see if she has any other strategies for me. I hope your mom can find some relief and some answers. Please let me know how it goes. Mona

Last edited by moderator2; 03-14-2008 at 03:25 PM. Reason: posted commercial website

 
Old 03-16-2008, 06:45 PM   #8
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Re: IGeneX Results - Input Please!

Mona, thank you for the doc. info. I hope that you are doing OK, and definately let us know how you are doing with your ABX therapy. Make sure that you are also taking supplements and probiotics. I don't think that my mom will go to Bellevue by herself, but when I come up in Aug. I will bring an IGeneX kit with me and take her to see the doc myself. Does the doc have a waiting list or can you usually get in without alot of advance notice? Thanks, Sarah

 
Old 03-16-2008, 08:34 PM   #9
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Re: IGeneX Results - Input Please!

Hi Sarah,

I don't think the wait is too bad, maybe a week or two...would be good to just get an appt made ahead of time for when you know you'll be here. I know she usually has IGeneX kits, however, the first time I met with her she was out of them - so would be good to bring one just in case. Good luck to you guys. Don't know much about how my abx therapy is going as I'm just 10days into it. I have had a few bad days, but I have those all the time so don't know if it's an actual herx reaction or just my "normal bad." I guess time will tell. Hope you can find some answers for your mom. Take Care. Mona

 
Old 03-19-2008, 04:32 PM   #10
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Re: IGeneX Results - Input Please!

Mona-HI--
It's been a while---it's Doug (former Hittman)---I'm glad that you finally have a disease to attack, and a direction to go for answers. I am seeing a LLMD on 4/2...maybe he can explain my symptoms--he's recognized as the best from everyone in this area...My suggestion is that if you're not satisfied with your Dr. or your progress, maybe she can do a phone consult with Dr. Raxlen...or another Dr. maybe in CT. where they have the most experience....Dr Raxlen worked in CT for years before moving to NYC---I know the DX is very clinical in nature, but it couldn't hurt...- Whatever you decide, I wish you all the luck---you are in my thoughts and prayers, even if I don't post too often anymore....Stay positive, and TOUGH.....I know good news is coming for you...
Doug

Last edited by moderator2; 03-19-2008 at 04:35 PM. Reason: posted commercial website

 
Old 03-19-2008, 07:17 PM   #11
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Re: IGeneX Results - Input Please!

Hi Doug,

I have looked for your posts...and wondered how you've been. I did see your earlier post about your appt. with Dr. R; I'm so glad you are pursuing that. Please post to let me (us) know how it goes, okay? Yes, at least I finally know what I'm battling. My IGeneX results, according to my LLMD, were pretty clear that this is my problem and my symptoms totally fit everything I've read. I've also compared my results to writings of more experienced docs, sounds like I'm a fairly slam dunk as far as the lab work goes anyway - clearly Lyme and clearly 3 co-infections. I have read and heard much about Dr. R - it's fortunate for you that you're near enough to see him. I sure hope he can guide you in the right direction. I think of you often and pray you will find answers and effective treatment soon. If I don't see results I am hoping for, yes - I will very much push to get more expertise and ideas with all of this - it's my intention to fight this crap and get well. I know it will be a long road (I'm working on my patience), but remain hopeful now that I won't be this bad off forever...take good care Doug. I hope you're not feeling too badly. Please post when you can....I'll be looking for you after 4/2! Mona

 
Old 03-21-2008, 05:09 PM   #12
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Re: IGeneX Results - Input Please!

Mona--Hi,
I've read some of your lyme posts...sorry you're still feeling crappy, but you know that if it's Herxing--that's a good thing...there is light at the end of the tunnel--you are definitely strong enough to beat this beast into the ground. I'm amazed at the amount of symptoms this can be responsible for, and for the lack of understanding in the medical community...especially on the West Coast---as long as people and products travel cross country, so can ticks...It sounds as if you are in good hands, but also that you are determined to find answers even if it means a different Dr, or not taking their opinion if it doesn't match all the research you're doing---and as you know there is a ton of info, and people on the web to assist you--you became an expert in C-Spine issues from all your research--you are determined to see this through, and that is the perfect attitude to have...It seems as though it will be a long haul, but one you are more than equipped to handle----think of the positive, of how you'll feel when this bug is eradicated, and you feel normal again---start planning a nice vacation for you and your family...(Yosemite in '09 ??).......I will keep you in my thoughts and prayers (I'll try to post more often----I haven't forgotten my friends and all the support you've given me)...Stay STRONG !! I'll talk to you soon.

PS--Maybe explain to your kids, that just a little more patience, and things will get back to normal for everyone.......might give you a little more slack (hopefully)

Last edited by Braveheart07; 03-21-2008 at 05:12 PM.

 
Old 03-22-2008, 07:30 AM   #13
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Re: IGeneX Results - Input Please!

Hi Doug,

Really great to hear from you. Thanks loads for the encouragement. I am far from an "expert" on C-spine stuff or Lyme. I just read what I can so I can feel somewhat knowledgeable about my health issues - mainly in effort to get well; I especially like getting information from others with similar experiences and trying to help others along the way that are struggling, that's all.

The question I have is how are YOU? I know you've been really sick and am wondering how your symptoms are at this point? I am very hopeful that Dr. R can help you or point you in the right direction. I know you have been dealing with things since at least last summer if I remember right. Yes, the demands of a family, especially the kids, make dealing with chronic illness so difficult. Yet at the same time, they're what keep me going - I know you can relate to that. I spoke with someone last night who has been on abx treatment for 6 months due to chronic Lyme and he's feeling a lot better which is a big encouragement to me. At the same time, he has no diagnosed co-infections like I do and I know the co-infections complicate things a lot, both symptoms and treatment. But, I try to keep perspective - things can always be worse, right?

Please let me know how YOU are doing. Does it seem your symptoms have progressed, wax and wane, change? Sending good thoughts your way - I'm sure 4/2 can't come soon enough! Take Care. Mona

 
Old 03-22-2008, 02:52 PM   #14
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Re: IGeneX Results - Input Please!

Hey Mona--
Twice in 2 days !!--lucky you--
My symptoms are slowly progressing---they are mainly weakness in my legs..making it difficult to walk, and severe weakness in my left hand. I was dx'd with a form of neuropathy with conduction block in my left median nerve--the neuro thought this explained the weakness, and I'm on IV therapy with IGg (gammaglobulin) to hopefully address that---so far it hasn't helped...I am very tired all the time..now I'm also starting to slightly slur my words....I haven't slept through the night in months--the only pain I've had was in my shoulder--it was dx'd as "frozen shoulder" and I'm doing PT for that---it's slowly getting better.....These all could be lyme symptoms...my neuro's have said I have "a mixed bag" going on, one (an ALS expert, was "puzzled")...so it kind of makes me believe that I have to look "outside the box"..thats when I started researching Lyme, and statin toxicity (I was on statins for 5 years, and had neuro side effects in year 4 1/2-5)......Dr. Rax has dx'd lyme in others, that had been missed by doc's for years, so I'm hoping he has some answers for me too---I'll definitely let you know how it goes---the toughest part is staying positive, and not letting this situation dominate my life--my kids need me to be as "normal" as possible and that keeps me sane--little league is starting, and the weather is changing, so sunny days are ahead !!
Talk to you soon Mona-
Doug

 
Old 03-23-2008, 07:57 AM   #15
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Re: IGeneX Results - Input Please!

Hi Doug,

I'm so sorry your experiencing such troubling symptoms. I can imagine that it must be very difficult to stay positive, and quite frankly, I think it's okay not to be positive, at least some of the time. It certainly is not fair, frightening, and frustrating not to have effective treatment at this point - sometimes you just have to let that anger and fear out, don't you think? Okay, maybe wait until the kids aren't nearby...but you know what I mean. I promise you will be in my prayers that Dr. R will be able to help you. I may have mentioned that my dad is being tested for Lyme as well. He was on the same hiking trip with me and has had many unexplained symptoms, some of which appear clearly related to Lyme to me. In the course of trying to get help, a doctor put him on steroids (very contraindicated for Lyme) and they're somewhat masking his symptoms. But, what I wanted to say was...his earlier symptoms were terrible weakness in his legs - had trouble walking, balance issues etc. I think this can manifest in so many ways and so can many other ailments creating similar symptoms.

Please post when you're up to it or need a little bit of encouragement - you're on my mind a lot. I will try to check this board when we're away April 3-13, heading to the Grand Canyon...as I want to know how things are going for you. Sending positive thoughts and prayers your way Doug. Make sure your wife posts too when needed, this has got to be a heavy load for all of you...she may need a little support as well... Mona

 
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