Lyme or not?? Need help please

Hi Mrs Espo,
Welcome to our forum. 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 (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from, and it will likely answer a bunch of questions for you as well.

Don't wait, take the abx! Believe me, you don't want to have to deal with chronic Lyme. Your primary doc doesn't have the training to be able to know whether you have Lyme - they never were taught the facts in school, they are only going on what the Infectious Disease docs say, and their information is wrong - although there are a few exceptions, some ID doc's don't follow what their own society tells them...and we are grateful for them!

ILADS (International Lyme and Associated Diseases Society) is the one who is being sure that some doctors have the appropriate training to not only be able to diagnose, but to treat these infections so that there is hope of a person not having a relapse. The most knowledgeable LLMD's (Lyme Literate Medical Doctors) will diagnose Lyme clinically (by symptoms) and hope that the blood tests will confirm - but will treat based on symptoms.

We have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge about our infections and the different ways to treat them!

The blood tests that are generally used are not very accurate, only detecting 50% of those that actually have the infection(s), so the fact that you tested positive is very meaningful.

Do you have a copy of your test results? If so, could you post the positive bands and and that have a "IND" beside it as well? Then we can walk you through what each band indicates.

If you have had the bull's eye rash, that is the skin form of Lyme disease - not just a sign. Generally those who don't have symptoms immediately will have symptoms come on later when the body has gone through some stress of some sort.

Since Rhuematologists generally don't have any special training when it comes to Lyme either, chances are that they won't know about these very complex infections either - although most try to pretend that these infections aren't a big deal.

I would highly suggest that you get in to see a LLMD and get some treatment started right away, or go back to the doc that told you that you have Lyme and stick with them.

Many will feel worse once the right abx are started simply because the abx kills off bacteria, which creates toxins in the body which drive our symptoms. Detoxing, drinking lots of water to flush these toxins, eating as healthy as you can afford to, and some other things will almost certainly help you feel better.

If you would like to find a LLMD, I do have some links that I can post that will take you to where you can get a referral.

Oh... My PCP says this rheumatologist specializes in Lyme disease.

Since it was your PCP who said your Lyme test was negative, I would suggest that you believe that they don't know what they are talking about when it comes to these infections! You show a positive on both the IgG and the IgM - in significant bands.

Under IgG do you see where it says that Band 39 is present? That's specific to Lyme. It's indicative of BmpA - Bacterial Membrane Protein "A". Nothing else will 'light up' Band 39. This indicates that the first doctor was right and that was a bull's eye rash - the skin form of Lyme disease.

Under IgM, you are positive for Band 23, which is OspC , although it's Band 25 that's specific to Lyme. New research may indicate otherwise, but as far as I know, Band 23 isn't specific to Lyme - meaning that other things can make that show up as reactive on the Western Blot.

Band 41 indicates the tail end of a spirochete, but other spirochetal infections can make this show up as positive. Lyme bacteria is only one type of spirochete, another is syphilis. (I'm in no way trying to say that you have syphilis - it's just an example!)

So the one real positive that you have that is specific to Lyme indicates that you have been infected for a while.

There is a chart at the bottom of this page so that you can see this for yourself - no need to take anyone's word for this!
www.anapsid.org/cnd/diffdx/wb.html

Personally, I wouldn't bother with the Rhuemy's appt, but if you want to see what they have to say that's different - it's not likely that they will agree with the known science, since they don't believe that it's known science that shows you have the infection (the Western Blot).

Unfortunately you are likely already dealing with chronic Lyme, and since Lyme rarely presents as the only infection of this type, I would suggest that you look at the symptom lists of the other infections that are listed to see if you fit any of them.

You shouldn't waste any time and find a doctor that will treat you for this very devastating disease before it gets any worse. There are plenty of us here that have gone that route and regret it to this day. Fortunately, I found the best way for my body to heal and no longer live with these diseases. I hope you take my urging seriously. Please find a LLMD that will treat you properly with science and evidence based protocols.

Here is the info that I post to all who are looking for a doctor to treat these terrible infections. You can also choose to use a Holistic Practitioner, as several here are doing, or follow the suggestions below:
For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD 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 also email our long time member, Dan's Mother at:[email protected]

You can also 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 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. 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

One more thing - read, read, read. The better informed you are about these diseases, the better you will be able to advocate for yourself so that you too can have your life back.

Unfortunately you are likely already dealing with chronic Lyme, and since Lyme rarely presents as the only infection of this type, I would suggest that you look at the symptom lists of the other infections that are listed to see if you fit any of them.
Thanks so much for your response! Where can I find the list of other infections you mentioned above?
Thanks again!
J