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» LymeNet Flash » Questions and Discussion » Medical Questions » Help with Igenex results and other questions

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Author Topic: Help with Igenex results and other questions
PatioGazer
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Hello everyone. I need some help with Igenex WB results I just received, and with some additional questions I have. The results are as follows:

IgG:
34 +/-
39 +/-
41 +
58 +
66 +/-

IgM:
18 +/-
28 +
30 +/-
31 +/-
39 +/-
41 +/-
45 +/-
66 +/-

All bands not listed resulted as negative.

Of course the regular doctor read from the Igenex sheet and said these are negative for Lyme. I realize that Lyme is a clinical diagnosis and that blood test results are only part of the picture but I need some help with the following questions.

1. Has anyone had similar results and actually had Lyme? What are my results showing? Is it possible this really is Lyme? Some input from those of you who have seen many results would be greatly appreciated.

2. I'm curious as to there being more +/- results in the IgM since I have had "whatever" I have for several years. Any thoughts on this?

3. Would it be worthwhile to see if the LLMD closest to me would just look at these results and sort of "screen" them as to whether I should be seen by him or not? I ask this because the doctor is several hours drive away each way and I am so not up to that kind of a trip if he is just going to look at my results and flatly say "you don't have Lyme."

4. It seems as if some LLMDs consider equivocal results significant but others do not. How does someone know if treatment for equivocal results is legit? I want to try whatever I can that may help me but I don't want to be given some kind of false hope and stay on antibiotics if not warranted.

5. Are these results significant for anything else besides Lyme disease?

Thanks for any and all comments!


Posts: 15 | From Western Pennsylvania | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
David95928
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Although not a physician, just my own, I say that these results plus symptoms equal Lyme disease.

[This message has been edited by David95928 (edited 31 October 2004).]


Posts: 2034 | From CA | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
PatioGazer
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Thanks for your comment Dave. I guess I should have added that I do have many varied symptoms - I took the test on the CanLyme site and came up with about 36 or 38 positive responses. Lots of neuro, vision and muscular issues. The 16 or so doctors I have seen have all come up with nothing or next to nothing or the "wait-and-see what it turns into" diagnosis.
Posts: 15 | From Western Pennsylvania | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
David95928
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The number of doctors you have seen is probably diagnostic in and of itself.

I neglected to mention that my only positive band was 41 on IGg. My infection occurred in the late eighties and my treatment has been going on for almost two years. The diagnosis is definitely supported by positve response to treatment.

I've gone from hardly being able to turn doorknobs, climb a flight of stairs, a nine month headache..... 36/38 symptoms on symptom list, to building a house. Let me know if you want to learn more about my course of treatment.

My recommendation is don't waste your time and your life with a physician who is half-hearted about treatment. In some areas there are docs who have general practices and treat Lyme aggressively. Depending on where you are, this might be an alternative to an LLMD, if you are prepared to take and active research and advocay role in your treatment.

You responded quickly, so you must be watching the board. If you post a message for me and I don't respond promptly, it's because I'm off to wrap the house against the weather.

David


Posts: 2034 | From CA | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
Jewlbug
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Hi,

My testing thru Igenex was also, overall, negative. However, based on my clinical symptoms and the numerous bands that did turn up + or +/-, my LLMD did treat. If I were you, I'd definitely seek a LLMD for their opinion.

Good luck!
Jewl


Posts: 79 | From Chicago, IL | Registered: Sep 2003  |  IP: Logged | Report this post to a Moderator
mycoplasma1
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David,

I also had similar Igenex equivocal results and up to now was diagnosed with CFIDS (my t-cells are screwed up and I also have CMV, HHV-6, Myco (now -).

I was wondering what your protocol was David and what helped you to get well. I think I've had this for 10 years. First heart symptoms in 1995, then GI problems in 98-present and panic attacks, Neuro problems, weakness, flu symptoms, night sweats, weight loss, etc..

I am now seeing Dr. B in Rhinbeck, NY who is a naturopath/MD and Lyme specialist.

Would love to hear from you David.

Thanks!

Chris


Posts: 216 | From Upstate NY | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
David95928
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Chris,

My protocol hasn't been anything fancy.

Antibiotics have been Bicillin LA and Biaxin.

In addition, I use several things to keep residual symptoms down.

- Magnesium sulfate 1gm IM ((for muscle cramps and facial twitching) 2-3 times a week. Twice a month, I add 1ml fo Vitamin B12 for aphthous ulcers.
- Vitamin B Complex IM 1 ml IM 2-3 times a week for angular stomatitis (cracking in corners of the mouth.
- Detox Tea by Yogi Tea Co. for herx symptoms, which I still have

That's pretty much it, other than a massage every couple of weeks. Although keeping up with everything is a bit of a hassle, I am able to live normally.

Hope this helps.

David


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Lymetoo
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Hey there! welcome to Lymenet!

I'm heading off to bed.....but wanted to leave you with this link. Read it thoroughly. In my humble opinion, you most likely have Lyme. [I am not a dr!] Equivocal bands are just as good as positive bands in my book.

Dr C of MO explains that in his handout on the Western Blot interpretation. Here's the link to that explanation.

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

I hope you will find an LLMD ASAP.

------------------
oops!
Lymetutu

[This message has been edited by Lymetoo (edited 01 November 2004).]


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seibertneurolyme
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Get yourself to the nearest LLMD ASAP !!!!!!!!

Seriously, don't waste any more time going to ducks who take your time and money and can't help.

This based on experience with my husband -- Physician #16 diagnosed Lyme disease but Steve did not get any real treatment until Physician #49 (our first LLMD) -- all but one or two of the ones in between refused to believe diagnosis.

Symptom improvements from Physician #49 did not last because he didn't treat coinfections -- make sure you are tested for these.

Currently looking for new Physician -- not sure of # -- need to update my list. The important thing is to find a knowledgeable physician who can be a partner and will answer questions. I always feel like you can learn a lot about a doctor by talking to their office staff. Competent doctors do not tolerate incompetent staff as a rule. If the staff is friendly, helpful and organized then the doctor usually is too.

Don't get discouraged with treatments. I always tell my husband that he has been sick more than a day so it will take a long time to get well. Expect some setbacks and ups and downs. I hope you have a family who are supportive -- it is really important to have family and friends who believe in you and can help you get through the tough times.

Best Wishes,

Bea Seibert


Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Another idea. You might try calling the LLMD you are considering seeing and ask to speak to a nurse or the new patient contact if there is one. Ask what tests the Dr. relies on -- most will tell you outright if they use MDL or Igenex etc. and just ask some general questions about coinfections -- if they test or treat etc.

I have even asked for referrals -- if they have a patient you can talk to. Some will and some won't -- but it never hurts to ask.

Go to your appointment prepared. Make a list of questions. Take copies of any medical records you have and try to locate any that might be relevant -- even if you need to get copies from previous doctors.

Also, take your symptom list. It doesn't matter if these notes are typed up or are handwritten -- just so you have the info written down. That way you won't forget anything and the doctor can put it in your chart so he won't forget either.

If you have time and can remember -- a brief chronological (in date order) medical history would also be of help since you have been sick several years. List any significant illnesses or symptoms with the
dates or approximate dates.

Good luck.

Bea Seibert


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PatioGazer
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Thank you all for the responses. I think I will call the office of Dr. J in PA and see what I can find out. I am just a bit nervous about him because I saw him on a local news show and he seemed very 'by-the-book' when it came to diagnosing Lyme. We shall see though.

That link was very helpful as well. I had glanced through it before but a second reading was needed. The comment about why IgM could be more positive in chronic cases shed some light on that question for me.

It has been helpful to see that some of you had results similar to mine and improved with antibiotic treatment...I think I just don't want to go to another doctor and have him or her examine me, tell me there is nothing to be done for me, and then send me on my way.

Again, I really appreciate the comments!


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treepatrol
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Bands found, or tested for, in IgG analysis in USA or Mexico.

18-kDa
20-kDa
21-kDa
22-kDa
23-kDa
24-kDa
28-kDa
29-kDa
30-kDa
31-kDa
34-kDa
35-kDa
39-kDa
41-kDa
45-kDa
55-kDa
58-kDa
88-kDa
62-kDa
66-kDa
93-kDa


Bands found, or tested for, in IgM analysis in USA or Mexico.

18-kDa
21-kDa
23-kDa
24-kDa
25-kDa
28-kDa
37-kDa
39-kDa
41-kDa
45-kDa
55-kDa
58-kDa
60-kDa
66-kDa
93-kDa


Yours
IgG:
34 +/-=OspB. Specific for Bb
39 +/-=BmpA. Specific for Bb
41 +=FlaB
58 +
66 +/- =p66 Oms66 Hsp outer/integral membrane protein
IgM:
18 +/-=p18 flagellin fragment
28 + =OspD, Oms28. Specific for Bb
30 +/-=OspA substrate binding protein
31 +/-=OspA
39 +/-=BmpA. Specific for Bb
41 +/-=FlaB
45 +/-=appears for HGE
66 +/-=p66 Oms66 Hsp outer/integral membrane protein
Abbreviations:
Bb Borrelia burgdorferi
Bmp Bacterial membrane protein
Fla Flagellin
HGE Human granulocytic ehrlichiosis
kDa kilodalton = molecular weight
Oms Outer membrane-spanning
Osp Outer surface proteins
p Protein
Band Markings
When reporting bands, the reporting laboratory marks each band with the following indicators of intensity:
- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (there, but not as intense as Low)


Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
PatioGazer
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OK, treepatrol, I think you are maybe telling me that I should see an LLMD, yes?
Posts: 15 | From Western Pennsylvania | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
bg
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Patiogazer, may I suggest you edit your profile and show your state only so those lymies there can better help you finding a good LLMD that they possibly use!

Yes, do NOT wait; find a LLMD using the links below.

Or post for your STATE(S) you are willing to travel to & say which states they are, ok.

Best wishes in getting help now.

See TINCUP'S new members link....will keep you reading for weeks! Betty G., Iowa


Posts: 1 | From US | Registered: Aug 2015  |  IP: Logged | Report this post to a Moderator
PatioGazer
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Thanks for the suggestion bettyg. I have two doctors names from western PA and as far as I know they are the only two around, but if anyone knows of others, feel free to let me know.
Posts: 15 | From Western Pennsylvania | Registered: May 2004  |  IP: Logged | Report this post to a Moderator
   

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