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New To Lyme - Please Help - I'm Confused

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Posted 12/18/2014 5:27 PM (GMT 0)
Hi Everyone,

I am new to this and just got my IGenex lab results back from my LLMD. Could someone help me figure out if this is actually Lyme. I have been suffering with neuro symptoms (twitching both facial and body wide, muscle pain, fatigue, dizziness, light headedness, anxiety, tingling at times, slurred speech because of a tongue lag, sensitivity to light, increased floaters, funky taste in mouth etc...) all of these symptoms have come and gone and move around my body non stop. None of the symptoms are constant.

I have been to every possible doctor for the last 2 years and no test found anything. They kept telling me I have anxiety. Please let me know what you think of my results. Is this really Lyme? Maybe I'm just jaded because I've been waiting to find the reason for my symptoms for so long and nothing worked. Even the brain MRI came back clean.

IGM
18+
23-25 +
31 +
34 +
39 IND
41 ++
66 +
83 - 93 IND

IGG
28+
39 IND
41 ++
58+

Post Edited (Happy33) : 12/18/2014 10:58:40 AM (GMT-7)

Posted 12/18/2014 5:59 PM (GMT 0)
Hi Happy!
Welcome to our community!
If you haven't already, 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 probioitics and much more.

As for your test results, welcome to the "Lyme club"! Here is the site that I use to help interpret your test results:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG results mean a later stage of the infection.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto (Bb, ss) - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss.


Bands 18 & 41(whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Bands 23 - 25 - indicate OspC - Outer Surface Protein "C" - and band 25 is Lyme specific.

Band 28 OspD/Oms 28 - Outer Surface Protein "D"/Outer Membrane Spanning protein 28, specific for Lyme.

Band 31 indicates OspA - Outer Surface Protein "A" and is Lyme specific.

Band 34 is OspB - Outer Surface Protein "B", Lyme specific.

Band 39 is BmpA - Bacterial Membrane Protein "A" - Lyme specific.

Band 58 - is thought to possibly be B. Afezelii, generally found in Europe, but with people & birds doing so much travel, it's being found much more frequently in other parts of the world now.

Band 66 is Oms 66 - Outer membrane spanning protein 66 - known as a heat shock protein that is an outer/intregal membrane protein. It's thought to be specific for B. Hermsii - a strain of Lyme that is common in the Western US, but with people & birds doing so much travel, it's being found much more frequently in other parts of the US now.

Band 83 - high molecular mass protein that is specific for Lyme.
​
Band 93 - an immunodominant protoplasmic cylinder antigen that is specific to Lyme.

So as you can see, you results are pretty overwhelmingly Lyme specific. From what I can see, you have only missed one Lyme specific band - band 28 - so there should be no doubt that you have Lyme at least.

Do you have a LLMD (Lyme Literate Medical Doctor), yet? You will need one to get the proper treatment to heal these infections. Very few Infectious Disease doctors will give enough treatment - we have many members here that have developed chronic Lyme thanks to inadequate treatments.

For information on finding a LLMD in your area, you can start a new thread (or change the title to this thread) titled something like:"Looking for LLMD/LLND in the _______ area." Although 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 envelop under my screen name. I may have contact information for some LLMD's in your area as well.​
​Please include your state and area that you would like to find a LLMD in and I will see how close I can get.​


You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ 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 can also now email TBDA (Tick Borne Disease Alliance) at [email protected]​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) 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 Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

The best news, other than now knowing what is going on, is that you are not alone!! We are here to help you learn about these infections and the options you have!!
Posted 12/19/2014 3:18 AM (GMT 0)
Welcome Happy33.
Posted 12/19/2014 2:56 PM (GMT 0)
Thanks Dyingtogetwell! If you have any pointers/advice, please share! It's been a very difficult emotional experience so far.
Posted 12/19/2014 5:13 PM (GMT 0)
You should start detoxing right away. There are many great detox methods listed in the thread at the top of the page: "New to Lyme?...Start here".

This will help you rid the toxins out of your body once the treatment starts to kill the bacteria.

Look at your diet and decide if it's a healthy one. You will want to eat lots of vegetables, good protein...and limit or cut out your simple carbs.

And just as importantly (in my opinion) - keep coming to the forum to read, and post. It will help you get through the tough times. We are going through what you are...and can support you.
Posted 12/19/2014 5:37 PM (GMT 0)
Lyme. It's not just a disease, it's a lifestyle. yeah

You can start today to help yourself feel better. Regular exercise as tolerated, a couple quarts of lemon water every day, a lowered carb/high protein and veggie diet, etc.
For me, that started helping (with the joint pain at least) right away, and when I lost weight and started looking better in the mirror that helped the ol' self-esteem.

Your anxiety. Let's talk about that, considering two angles><.

> Borrelia has colonized and inflamed your nervous system. This has global effects in the body/mind, and anxiety, confusion, and fatigue further degrade your balance and decision-making abilities. This is not your fault. Your perception, from the inside, has been altered.

< family, friends, coworkers, and doctors will judge and criticize you for the degradation in your mental/emotional balance, by mistakenly thinking that you aren't sick, but rather are neurotic. This, at times, despite clear signs that a physiological phenomenon is in play. Chalk that up to human nature and ignorance, and again, it's not your fault.

So right now you're getting it from both sides. With a sick and misunderstood you in the middle.

As you go through the process of testing/assessment, treatment, and management of the illness, you'll begin to make connections about how deeply and thoroughly the bug(s) took over your life and messed things up for you, and you'll grieve lost years and missed opportunities for happiness.

At the same time, as you're healing, you'll be in a better position to embrace the new opportunities and become whole again. That's the pot of gold at the end of the rainbow. yeah
Posted 12/19/2014 5:39 PM (GMT 0)
Woe! I'm not a dr...but it looks like your western blott is a CDC positive!

Ok....so I'll explain, as far as I understand it. Basically, to determine if one has lyme, based on labs...one looks at antibodies (ELISA), if the antibodies are high (part of the immune system that remembers a specific pathogen), another test is done to rule out a false positive. This is because, lyme antibodies can also be elevated for the cousin of lyme, syphilis, or other viruses...
(That being said....if one has a chronic (over 6 months) infection, antibodies can also drop....So I don't know what your ELISA is)
So they then look do a western blott - this is looking at the molecular weights of the pathogen, / borrelia. The CDC makes up stinky rules...that you need 5 bands of I think the IgM (antibodies - the M I think is the antibody that comes out right away when one is exposed...and while one has the infection..followed by IgG).
The problem with this is that they often look for it in the blood when the bacteria are in the brain, joints, etc...so you don't often get enough bands. and even if you look at other fluid it doesn't always come out...
I think for the IgG(antibodies) according to the CDC you need 2/3.

However, there are bands that specific for lyme. Meaning, those molecular weights = specific parts of the bacteria that are only in the borrelia, so many dr.'s say because the tests are inaccurate, you have the symptoms, antibodies, and specific lyme bands....It's lyme, no doubt.

Interesting, that it looks like you have a positive CDC western Blott with lyme specific bands.
If your antibodies are low, it is possible that once you start killing the bacteria/lyme, your immune system will wake up and start fighting as well, and you can get a positive ELISA.

....In terms of the MRI, it basically looks at structure, and not what's going on in terms of bacteria, and on the cellular level.. Sometimes it will show some inflammation, which if it doesn't, it doesn't mean that there isn't ...just that the test didn't pick it up...Or if really bad, it can also show lesions on the brain caused by the spirochetes(spiral shape of borrelia)....Yet, u'll probably need it done with contrast for any of this to show....which there are cons to. Therefor, a normal MRI, doesn't really rule out lyme....So therefore in short, go to someone knowledgeable...that is Lyme Literate, hence LLMD or LLND (lyme literate MD, or Natralpathic Dr.)....that will see beyond policital protocols for diagnosing.

Good luck...Hope this gave you more of the info. you wanted.
Posted 12/19/2014 6:23 PM (GMT 0)
Welcome Happy, some excellent info given in this thread. Good luck with your treatment.
Posted 12/20/2014 9:11 PM (GMT 0)
Thank you for your help everyone. It really feels good to have some support. I got the western blot test after getting negative Elisa test from a standard doctor. I actually went to an LLMD because I read on a discussion board that my symptoms sound a lot like Lyme and since all the visits to doctors and all the lab results from every possible doctor in the past 2 years have not been able to diagnose the cause for these neuro symptoms, I went without a referral from my GP.

My LLMD asked me to fill out a very comprehensive questionnaire and following the review of my questionnaire, thought that there was a high probability that this was Lyme. a few weeks following, I got these results and am now on on Omnicef and Zithromax. He prescribed those two for 6 weeks and then I am supposed to replace the zithromax with Rafampin and take it and Omnicef for another 6 weeks.

How long after starting treatment should I expect to see improvement to my neuro symptoms? Twitching, pin pricks, anxiety, light headedness.

I am not feeling any different after starting the antibiotics.

Thank you all so much for your help!
Ido
Posted 12/20/2014 9:19 PM (GMT 0)
I'm so glad to hear that you already are seeing a LLMD! Depending on how long you have been living with these infections, other infections you may have and other conditions you may have, you could begin to see small improvements withing 2 months if every thing goes right. But, everyone is different, so it's hard to say.

Do be sure that you are doing a lot of things to help your body to detox. This is an incredibly important part of our healing, because as the bacteria die, they release toxins and many of us find out that our bodies have a hard time detoxing these toxins.
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