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Had a few visits with ID Doctor - would like comments

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Posted 7/12/2011 4:06 PM (GMT 0)
Well, I've had Lyme-like 'symptoms' for about five years. Testing by my local PCP showed no Lyme. Then I tested again about 4 weeks ago and had my PCP refer me to an Infectious Disease doc. The ID doc said my IGM was elevated, but my IGG would also need to be elevated to diagnose Lyme. I think I am getting that right, but I may have reversed those two terms.

The ID doc is having my gall bladder tested, and wants to do another Lyme test in about 60 days.

I asked the ID doc about maybe doing the "Igenex" testing and he casually dismissed that test as unnecessary.

So, I don't feel any closer to a diagnosis at all. Perhaps I do not have Lyme. But the 'anecdotal' evidence suggests I do. I have been bitten many times and my symptoms mirror those found on this forum.

Any opinions as to my next step? Should I have the Igenex testing done?

Thanks
Posted 7/12/2011 5:56 PM (GMT 0)
IgM generally tests for acute infection where IgG looks at longer term (more chronic) infection the wy I understand it. So, either/or being positive for Lyme indicates Lyme not one or the other. Highly suggest an LLMD.
Posted 7/12/2011 6:54 PM (GMT 0)
Hi Mojo,

I agree with yazzer that you should seek out the advice of a Lyme Literate Doctor. Even the CDC recommends that Lyme Disease be diagnosed clinically, the testing being largely inaccurate.

This is particularly true if you have been infected for as much as five years. The disease suppresses the body's ability to produce antibodies; it is those very antibodies that they are looking for in the tests.

A LLMD will also help you find out if it is some other disease.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]
If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

You will also get some good suggestions from our other members if you start a new thread entitled, "Looking for LLMD in (state the area you live in or nearest large city).

Good luck -- I hope you get some answers soon.
Posted 7/12/2011 7:22 PM (GMT 0)
Well, thank you both very much for the replies.

The thing is - the doc I am seeing actually runs a Lyme Clinic in this area. He was indeed recommended as a "LLMD", which is one of the primary reasons that I selected him. This guy is 100% convinced that "clinical" diagnosis does not work (I asked him specifically about this, as my list of symptoms mirrored almost exactly a symptom list on this forum - which I had printed out and brought with me). It seems like he is totally focused on the results of the testing.

But I must admit, I am disappointed that he is so reliant on testing, yet he dismisses the 'Igenex' testing protocol as unnecessary.

Sign me, lost and confused.......

Thanks again, Dave
Posted 7/12/2011 8:09 PM (GMT 0)
Hi Mojo!
I agree with the advice you have been given here! ID docs like that make me sooooo mad! devil They just don't get it! Here is a link to the CDC's own website that states "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods."
www.cdc.gov/lyme/ Although I do have to say that is about all they got right!! At one time a person could find that more than just the deer tick (Lone Star & Brown Dog ticks as well) transmits Lyme on the CDC site, but for some "strange" reason they took this info down from their site!! Please see www.georgialymedisease.org/. Scroll down a bit and on the right hand side of the opening page you will see this story.

I've done a bit of reading on the "Lyme clinic" that you are most likely referring to. They really don't know what they are talking about. Here is a site that explains why ID docs (most of them anyway) can't get it right:archinte.ama-assn.org/cgi/content/abstract/171/1/18
Even one of their own, Dr. Allen Steere, admits that abx treatment failure happens all too frequently!

Please don't be fooled by these uneducated people, Dave. You must be your own health advocate now. Only you know what you live with, and that there is still something very wrong. Please read an article by a well respected LLMD, Dr. Joseph Buurascano, titled "Advanced Topics in Lyme Disease" betterhealthguy.com/joomla/images/stories/PDF/lymdxrx2008-october.pdf It's a real eye opener! It also covers the more common "co-infections" that travel with Lyme and their symptoms and suggested treatments.

Another thing you can do is to allow us to direct you to more articles and papers so that you can educate yourself!! You should start with the thread at the top of the forum titled New to Lyme?...Start here!" as it has a lot of really great info there as well!

You said your self that your symptoms match up with many of those who have been diagnosed with Lyme and other tbi's - don't give up - you know your body a lot better than that ID doc!

Please don't leave the fate of your health in hands that are not educated! You should seek out a LLMD and get the treatment you need!
Posted 7/13/2011 12:49 AM (GMT 0)
Yes remember these doctors are only human. There are know-it-alls in all walks of life. Do not just take someone's word on your life. Do the research. The infectious dr. I went to was really nice, handsome (LOL), has a huge practice in a very affluent area but he had no clue about lyme and wouldn't admit it. Start off by getting acopy of your lab work which you should always do. I went undiagnosed for many years because I was not aware of the lyme "controversy" nor aware of the "banding." When I was told I didn't have lyme, I believed like an idiot. No more. I question everything and everybody.
Posted 7/13/2011 2:00 PM (GMT 0)
Traveler - thanks for the links. I am reading the article by Dr. Joseph Buurascano. Very impressive.

Miss C - yes, it is VERY confusing.

I think I will have to select another doctor..........

Thanks all!
Posted 7/13/2011 3:46 PM (GMT 0)
HI Mojo,
I pretty much believe that Dr. Burrascano's paper ought to be read by every new member,as it seems to be a pretty good primer on what to expect and how important it is to get good treatment - but that's me!! LOL!

I took a look at your test results - I hope you don't mind - it definitely shows a reaction to band 41 - specific to the tail of a spirochete, not necessarily a Bb. spirochete, but there are only six known diseases where the causative bacteria is a spirochete - and only a couple that infect humans. I got this info from here:www.ucmp.berkeley.edu/bacteria/spirochetes.html

I would highly suggest that you do look for another doc - preferably one who follows ILADS (International Lyme and Associated Diseases Society) guidelines, which can be found in the "New to Lyme?" thread or here is a link: www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Here is our list of helpful advice to find a LLMD: For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:[email protected]

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


Also, I have managed to collect a few LLMD names myself, from recommendations from other members here. So if you happen to live in or near;
Mt. Kisco, N.Y.
Boulder, Co.
Near Memphis, Tn.
or Calgary, Alberta, Canada
I do have a name for each of these location.

Another thing, many of the state Lyme Disease Organizations now offer help in finding a LLMD. The best way to find your state would be to google "(your state) Lyme", you will be surprised at how much info is really out there!!

Please be sure to let us know not only how you are doing, but how your search is going!!
Posted 7/13/2011 7:07 PM (GMT 0)
Traveler - can you please explain how you see the reaction to Band 41? There is no notation on the result sheet showing abnormal?????

Thanks
Posted 7/13/2011 8:08 PM (GMT 0)
Okay, please remember I am not medically trained!! But what I saw was this: Starting on the 5th line - it states "Antibody capture IgM" (IgM means a more recent infection), follow that line to the right, and you will see that your level was 1.5. Follow on to the right and you will see the letter "H", which resides under the "ABN" column (which I am assuming means abnormal) which I would gather means that you are abnormally high, since to the right of that you can see under the columns of "low range" and "high range" and the values assigned there are <1, and you showed a 1.5.

The 9th and 11th lines tells you that you have 1 reactive band, although this lab requires that 5 bands be positive to confirm their diagnosis - which is wrong -but not a point to argue. It'll likely take years after we get docs on board with the right info for the labs to get it right.

Now go on down to the 10th line and you will see that it says "Blot IgG strain G39/G40 band in kD" the next column over to the right shows the number 41, with nothing else showing up on any column in that 10th line. This is what I suspect is indicating Band 41 of a spirochetal infection.

On the 11th line I don't understand what they mean by "Blot IgG strain 43736 # reactive bands" I don't have a clue what those number represent, although there they are saying that you have 1 reactive band as well. Nor do I understand on the 12th line what the numbers 49736 mean, but it also shows the number 41.

I could also be very wrong!! smhair It's best to talk to the doctor that ordered the test.
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