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New and looking for input on Western Blot test results

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Posted 12/29/2016 6:06 PM (GMT -5)
I took the Western Blot originally in Nov 2015 through lab corp. Here were my results:

Igg P93 Ab. Absent
Igg P66 Ab. Absent
Igg P58 Ab. Absent
Igg P45 Ab. Absent
Igg P41 Ab. Absent
Igg P39 Ab. Absent
Igg P30 Ab. Absent
Igg P28 Ab. Absent
Igg P23 Ab. Absent
Igg P18 Ab. Absent

Lyme Igg Wb Interp. Negative

Igm P39 Ab. Absent

Lyme Igm Wb Interp. Negative
Igm P23 Ab. Present
Igm P41 Ab. Absent


I was just recently tested again and here were my results:

Igg P93 Ab. Absent
Igg P66 Ab. Absent
Igg P58 Ab. Absent
Igg P45 Ab. Absent
Igg P41 Ab. Present
Igg P39 Ab. Absent
Igg P23 Ab. Absent
Igg P28 Ab. Absent
Igg P18 Ab. Absent

Lyme Igg Wb Interp. Negative
Igm P41 Ab. Absent
Igm P39 Ab. Absent
Igm P23 Ab. Absent

Igg P30 Ab. Present

Lyme Igm Wb Interp. Negative

I live in southern New Jersey and spend alot of time in the woods hiking and fishing. I never had a bullseye rash but have found many deer ticks on me over the years. My major symptoms are muscle pains, mostly in my back and legs, low energy, brain-fog and memory problems. My back is to the point I can't sit still for more then a few minutes without being in a significant amount of pain. My doctor doesn't want to treat for lyme and I can't afford to see a LLMD unfortunately. I definitely can't afford to pay for an IGENEX test.

Any advice or input would be greatly appreciated.
Posted 12/29/2016 6:14 PM (GMT -5)
I think based on your symptoms and location alone you should have begun some kind of treatment. Used to be Drs. would start you on Doxy even before the test results came back, but they don't seem to be doing that any more.

Anyway, that being said, I want to welcome you here, encourage you to read over our intro "New to Lyme?...start here".

You can self treat without an LLMD, you could use an herbal protocol recommended by Steven Buhner or Crowden. Buhner's books are not very expensive, ( no more than $15 in many cases). From that you can try to pinpoint your symptoms to recommended herbs, and order them on line or some can be gotten from local Health Food outlets.

You'll need to pay attention in our intro to diet to avoid yeast overgrowth (which won't be as much of a problem since you won't be using antibiotics, although it is possible to order antiobiotics off the web without a prescription.

We would be glad to help you figure out what usually works for different issues, including herbs for immune support.
Posted 12/29/2016 6:58 PM (GMT -5)
SW87,

Welcome. Glad you found your way to HW. This board is a lifesaver for support, information and expert advice - the mods and posters have saved me.

It does sound like you have lyme. The saying on here is nothing changes a lyme band positive except lyme.

There are herbs that you can do and there are people on here that can tell you where to begin.

Good luck to you - want to offer support.
Posted 12/29/2016 7:15 PM (GMT -5)
Thanks for the kind responses. I'm definitely a bit surprised that neither of the doctors I saw were willing to consider lyme. I'm completely open minded to any suggestions for supplements and will check out some of the herbal protocols.
Posted 12/29/2016 7:36 PM (GMT -5)
You are in good company.

We could do a poll on this board of how many of us went to doctor after doctor and lyme was never suggested.

ME: Gynocologist (for weird feelings in brain) - anxiety/depression/getting older. Offered Prozac. Turned it all down and move on.
Internist: Told it was my thyroid and stress
Neurologist: Told I was perfectly normal.
Internist again: Told fibromyalgia
Internist after tick bite: "You're fine. Most ticks don't even have Lyme disease."

SON:
Pediatrician (fevers, rashes), Sports medicine doctor (swollen knees), Endocrinologist (not growing), pediatrician numerous times for weird symptoms. I even said "Can this be lyme?" I was laughed at and told "Stop worrying you have a healthy kid."

So again, you are not alone!
Posted 12/29/2016 7:42 PM (GMT -5)
Oh the Doctors I saw:

- 4 GP's
- two Endocrinologists
- Neurologist
- ENT Dr.
- Neurosurgeon
- Physiatrist (not to be confused with Psychiatrist)
Posted 12/29/2016 7:53 PM (GMT -5)
I like this post. Not sure like is the correct word but I believe there will be a pattern.

Forgot about the psychologist I saw after my doctor whispered that I was going to have to realize it was all in my head! She even gave me a book.
Posted 12/30/2016 10:16 AM (GMT -5)
Hmm,
6 GP's
2 ENT
1 Infecious Disease
1 dermatologist
1 neurologist
3 rhuematologist
8 ER MD's
All came up with stress induced, CFS, all kinds of wierd maybe's and alot of it just a virus you look to good to be sick. and was almost laughed at when I asked about Lyme's because I didnt have a bullseye rash when I went in even though have had hundreds of ticks over my life and many which had small rashes.
1 MD that was family practice who I found as an LLMD
who said you have Lyme's, Bartonella, Babesia, Erlichia and started treatment.

Post Edited (nberg) : 12/30/2016 8:21:44 AM (GMT-7)

Posted 12/30/2016 10:29 AM (GMT -5)
But to your original question band 23 is Lyme's specific so yes symptoms = Lyme's and band 23 Is just an added bonus to verify that you do indeed have it.

Nick
Posted 12/30/2016 10:38 AM (GMT -5)
Agree, many of us have had only IgM band 23 show positive, and wasted too much time listening to regular doctors and specialist deny Lyme.
Posted 12/30/2016 11:41 AM (GMT -5)
I was just a bit confused why I tested for different bands on 2 different tests. I guess that just demonstrates how unreliable testing can be. Considering I tested for a Lyme specific band I'm thinking I should try to find the means to see a competent doctor for a diagnosis.
Posted 12/30/2016 11:54 AM (GMT -5)
As you can see from the other posts, many of us with lyme have been to many doctors. It is a long expensive journey to get a diagnosis.

Unless you fit the criteria on your western blot test as Center for Disease Control (CDC) positive, many doctors are very reluctant to diagnosis you as a positive lyme patient.

I am one of those that is not CDC positive. Nor did Igenex put me as a positive.

However on the bottom of the Igenex test they say that it is just a test and that a diagnosis should be determined by symptoms. So even the testing company knows that the tests are not completely reliable.

If your intentions are to find someone to say "You Have Lyme Disease" you may be in for going to as many doctors as the above and I have.

I say, research and see what you come up with that seems in your mind to be the best fit for your treatment. There are many to choose from. Pick that one and give it go. If you start feeling better, even the slightest, then you have your answer.... you have lyme.

Just don't expect a miraculous recovery. Lyme is not a 2 week cold bug or a 24 hour flu bug. Lyme is a nasty convoluted bug and it rarely travels alone.

Good luck and we are here to help you with your questions. All of us were new here once and had the same questions as you have now.
Posted 12/30/2016 12:38 PM (GMT -5)
Hi Sw,
Welcome to our community. I'm glad you found us.

I won't even begin to try to count the number of doctors I've seen searching for my diagnosis - I was infected by the age of 7 and not properly diagnosed until age 44. It's been a long road.

With your test results combined with your symptoms, there is little doubt in my mind that you have at least Lyme. As PeteZa said, Lyme rarely travels alone, so do keep your eye out for more symptoms as they can come at any time, even after you've started treating Lyme.

The testing is so poor because they are trying to rely on the immune system to be fully functional, which it is not when a person has Lyme - and they've known this for a very long time. Lyme inhibits the immune function, so expecting it to operate 'normally' and produce the antibodies for the bacteria means there aren't many 'fully CDC positive' tests for many of us. I got mine after a full year of Lyme treatment only.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at medicalinfo@tbdalliance.org​ for LLMD referrals.


You can 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​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And www.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf
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