I got my Igenex results

[Moxie]

Hello all. Do you ever feel like your clinical picture just gets muddier and muddier?

(I've left out the negatives for simplicity)

IgM
23-25 ++
31 +++
39 IND
58 ++
83-93 +

IgG
31 +
34 IND
39 IND
41 ++
58 +

I feel like I have a halfway decent grasp on how they're interpreted. Both Igenexx and the CDC consider the IgM to be a clearly positive result. The only "grey zone" here appears to be the IgG. Igenex calls it positive, while the CDC apparently does not. Has anyone come across a good reason for the discrepancy? Why CDC requires 5 of the specific bands to be positive instead of the 2 that Igenex requires?

Also, I understand that Lyme appears to trick our immune systems, so lack of IgG doesn't mean lack of chronicity. I think I know my GP well enough to know she'll hesitate to bring out big guns for this, so I'll probably be looking for a good LLMD. If anyone knows of one in VA, I'd be grateful.

My treatment options are going to be colored by the fact that I was treated nearly a year ago with Doxy, SMZ, and Mepron. I had a severe angioedema reaction 3 weeks into treatment (atypical timing, I know) and had to stop everything. My immunologist would not explore testing to see which medication was the culprit without an ID telling her I needed further treatment. Therefore I have had no treatment since last September.

On the contrary, the ER put me on pred (bad but necessary) and I descended into my current hell during that time after the massive immune blowup + pred.

So, I'm allergic to macrolides (azithromycin etc) and I *might* be allergic to doxy, mepron, or smz (smz most likely but not confirmed). Or, as my immunologist said, it might have been an immune response to the bugs, rather than any of the meds..who knows because no one will test me. It was absolutely much more severe than the Herx's I had been experiencing.

I'm posting partially to share because I learn from reading similar threads from others, but I'm also always grateful for any input.

Moxie

 

[Ema]

This should help answer the CDC question, Moxie.

What do we know: Lyme is associated with more IgM than IgG antibodies. Certain antibodies, for example: 18, 23, 31, 34, 39 41?, 93 are HIGHLY specific for exposure to Lyme bacteria.

The argument that chronic Lyme can only be diagnosed when 5/10 IgG, CDC surveillance bands are present--which exclude 31 and 34, makes no logical sense. The exclusion of 2 very specific antibodies relates to a failed vaccine. The 10 antibodies were part of an epidemiological tool devised in 1994. This tool was never intended for diagnosis, but has morphed into a diagnostic criteria used by infectious disease physicians for the inclusion/exclusion of Lyme infection. Recently a patient with 7/10 of these antibodies was sent for a C6 peptide test for confirmation, because the infectious disease physician thought these reactions might be a false positive. Side bar: the C6 test measures reactivity to a protein, ViSE. The ability of this particular antigen to mutate is well established; the utility of this test has lessened over time.

http://lymemd.blogspot.com/2009/12/igm-question-is-it-chronic-lyme-disease.html

Are you near DC?

Have you also had your IgG (total and subclasses) tested?

Ema

 

[Moxie]

Thank you very much for that, Ema. Yes - sorry - I am in Northern VA. DC isn't all that close (45 minutes) but for a good doctor, I would travel there. The VA western suburbs are easier - Reston, Sterling, Ashburn, Lansdowne. Given that two of my doctors are out of state already, DC really isn't that bad.

I don't understand the question about the IgG. This is something different from the Western Blot IgG? A quantification? The only other arguably useful test I've had was last summer when I pulled off 2 nymph black-legged ticks and had acute textbook symptoms within 10 days. My GP tested my C6 which was "very high." It was subsequently re-tested and found normal by the ID doctor who refused to treat me further based on that and only 2 non-specific positive bands on WB.

That was when I went to the LLMD who put me on the protocol that I eventually had the reaction on. I stopped seeing her when she cavalierly directed me to resume the doxy and mepron without the smz. That was irresponsible given the severity of the reaction I'd had. I was also getting so much sicker. Seemingly by the day.

 

[snowathlete]

My understanding (which is based on what others have said, and has not been properly researched by me) is that the CDC require five bands because they are more conservative, and that the five are not necesary for making a diagnosis. It is only a requirement for reporting purposes. So, in other words, the CDC consider five to be cast iron guarentee of Lyme, but they accept that less can also be positive.

Additionally, a few of the five may actually not be specific, so thats daft, but there you go.

Ema's responce is my understanding too, though just to clear up the ? after band 41 - it is not specific to Lyme. It means you have spirochetes, which may or may not be Borrelia. It could be another known spirochete or an as yet undiscovered type. I am positive for band 41, as a lot of people are. On its own it isn't enough, but with your symptoms and other bands, it supports it being Borrelia.

It looks, and sounds like, you have a good chance of having Lyme. A good LLMD is definitely the right way to go. Treatment can be brutal, but it sounds like your reaction wasn't normal. Someone experienced should be able to help you work around that.
Have you been tested for co-infections?

Congrats on your results btw. I hope it leads to better health.

Best

 

[Moxie]

Thank you snowathlete. For the clarification and the congrats. It's so funny that this is cause for celebration, but I agree that it is! Any time something actually pops on a lab test it's not only validation but a target.

I also recently learned I have low NK function and high HHV6 and EBV titers. So..Lyme and CFS? Lyme causing immune suppression? Lyme causing CFS? Who knows, but at least I have the beginnings of a plan now.

I was tested for coinfections last year and re-tested last month. They've continued to be negative. The LLMD I was originally seeing placed me on the mepron and SMZ anyway because clinically I appeared to have Babesia. I herxed every time I took a dose, so it was hard to argue despite the negative test. It's notoriously difficult to test for anyway. Again, I only achieved 3 weeks of treatment.

I remember reading you tested positive for Lyme a bit ago, too, though I apologize..I don't remember the specifics. How are you feeling? Any noticeable gains with treatment?

 

[Ema]

I don't understand the question about the IgG. This is something different from the Western Blot IgG? A quantification?

If I were still in DC, I would look at these two doctors:

Dr Jemsek, http://www.jemsekspecialty.com/index.php

Dr Jemsek specializes in Lyme and may be a better choice for a comprehensive, aggressive Lyme treatment.

Two of my friends see Dr Sivieri in MD and they like him very much. Both of them say, though, that he may not be the best choice for an initial Lyme protocol. But for holistic, cutting edge immune therapies (like Hizentra if indicated), I think he is very very good. His website is crap though.

http://www.sivieriwellness.com/Locations.html

If you decide to see either one of these guys, I hope you will give feedback on your experience.

The IgG test measures immunoglobulins in your blood made by B-cells. These are not specific to Lyme. Any time anyone has recurrent, chronic infections, I think it is crucial to test for an immune deficiency disease. Low IgG levels can destroy your ability to fight infections no matter what treatment you undertake. I believe any time one tests positive for multiple infections that "normal" people are able to brush off, primary immunodeficiency disease should be considered and tested before any treatment is undertaken. It's a simple lab test and well worth the time and cost.

This website explains primary immunodeficiency very well:

http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/the-immune-system/

If you are low in IgG (and a surprising amount of ME/CFS patients seem to be low when anyone bothers to test them for it), replacement can literally be life changing.

Good luck! Keep me posted, please.

Ema

 

[Moxie]

Ah, thank you, Ema. I was stuck on Lyme specific stuff - the IgG quantitative assay makes a lot of sense.

I have heard of Dr. Jemsek. I'll look into him further.

Thank you again. I always find your posts very helpful. Do you mind if I ask..are you formally medically trained? You're very knowledgeable and well-spoken!

 

[Ema]

Thanks Moxie! You are very kind.

I did study biology and chemistry in college but I chucked the idea of med school after graduation and went to art school instead and became an interior designer. Please do let me know if you need new furnishings and then I can be truly helpful. The science background has been useful though there are many much more knowledgeable.

I'm very interested to find out what kind of protocol an experienced LLMD will prescribe for you given your history. Please keep me updated if you don't mind!\

Ema