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Posted 3/15/2017 5:31 PM (GMT 0)
HI. I have been sick for 20 years but have been able to hide it from the world until now because of the severe neurologic issues. I now have severe memory problems, heart issues, and cant breath very well. I have had the bulls eye rash and that is what made me think it may be Lyme. It is very hard for me to type so I will be short. Can anybody help tell me figure out if this test is really negative for lyme. It states negative on it, but im confused.

band 41 ++
58*
31 I
B. duncani IFA IgG 80

Thank you
Posted 3/15/2017 5:42 PM (GMT 0)
Hi martha, welcome to our community!

I'm sorry you have been sick for so long. Is this the first time you have suspected Lyme disease?

May I ask what lab you tested with? Was that an IgM or IgG result?

Band 41 is not lyme specific, it represents the flagella (tail) of spirochetes - and can be from lyme and a few other infections.
But it is often the first band to show up with lyme disease.

Band 31 is significant - even though you had an Indeterminate - it just means that it wasn't 'strong' enough to be considered a positive...but 'something' did show.

Also, what is the range for the Babesia test that you were IgG 80?

Because of your symptoms and these test results...I would find a LLMD and schedule an appt. for an evaluation.
Posted 3/15/2017 5:46 PM (GMT 0)
We can help you find a LLMD - just start a new thread titled: "Looking for LLMD in/near______" and fill in the blank.

Or, you can email me (click on the envelope under my name on the left) and I will check my list of LLMD"s and send you names.

Or you can contact the ILADS Physician Referral system:

ilads.org/ilads_media/physician-referral/

You will want a LLMD - someone who knows how to treat these infections...and doesn't follow the IDSA guidelines - that state treatment consists of a few weeks of antibiotics.
These infections - when chronic will need more than just a few weeks of antibiotics.
Posted 3/16/2017 2:16 AM (GMT 0)
First, I would like to apologize to all the people on this forum. When I first found this forum, I thought it was a bunch of crazy people that needed to put a label on their psychiatric problems. I am truly sorry for that. I think I wanted somebody to tell me I had cancer not something that was still debateable. Again I am very sorry.

I did think it was lyme about 10 years ago but my primary doctor did not think so. Then again about 3 years ago when the rash reappeared I was told it was not lyme but was tested for herpes (negative) I then swore I would never go to another doctor again until now. I just saw my first doctor that thinks it could be lyme but has not discussed the results with me. I called and requested the results be sent to me since my appointment is not until another 2 weeks. I am still not sure of what I have but its hard to deny when I appear to have all the symptoms. I wish I was able to post the picture of the rash I have, but I dont think I can.

Thank you for your response
Posted 3/16/2017 2:22 AM (GMT 0)
Wow do we really sound that crazy? lol

No, these weird crazy symptoms that lyme causes are definitely real and we live or have lived it.

When I first got lyme, I kind of wished I had something else (in a weird way). But that was fear making me think that way.

After you thoroughly educate yourself on lyme, it really is treatable. There may be no "cure" in the sense you take some magic pills and poof, it's completely eradicated from your body, but it's definitely treatable to feel pretty much your old self again and live a "normal" life.

Will your body forever be different? Yes. Will you have to be so much more health conscious and continue to do maintenance to keep things in check, yes. But it's not a terminal illness where you have 3 months to live.

Please continue to use this forum and you will learn a lot and heal well.
Posted 3/16/2017 12:10 PM (GMT 0)
LOL! I really do understand! Many people actually feel the same way, all because "society" won't accept that this is all VERY real. I used to tell doctors all the time "I don't have to make up any single symptom - they are all VERY real, believe me! Ask those that live & work around me how real they are!"

And believe me, it often feels like we are living in some science fiction movie!

But, I'm so glad that you have found us, and that you are recognizing what you have for what it is and are ready to get treatment so you will feel better!!!

With your test results, the bulls eye rash, and your symptoms, if this doctor doesn't believe you have Lyme, let us help you find a doctor that knows more. Just let us know that you are looking for a good LLMD and where you are located and we can be of help most likely.

Also, 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, here's another good place to find helpful detoxing routines: ​http://www.tiredoflyme.com/detox-methods.html​​
Posted 3/17/2017 1:11 AM (GMT 0)
Welcome, Martha. Some of us might agree that this bunch of ailments will make you crazy! Between the dr's that are taught that lab work is infallible and that never learned clinical diagnosis and the IDSA/CDC who are blithering idiots, it can certainly seem that being crazy is preferable. But unfortunately it is all too real. 70% of the cases are cured relatively easily. The rest of us have to struggle through the morass of the medical industry as well as the diseases. It isn't easy, fast nor cheap. Just keep at it. Illigimati non carborundum.
Posted 3/18/2017 3:19 PM (GMT 0)
I think what I should have said, was that the crazy one for thinking that was me! Somehow I thought everyone else was crazy but "I was truly sick". I now cant believe how horrible it was for me to think that. I can tell you that the worst of this how it has affected my brain. Its hard to read, write, and comprehend things, not to mention the embarssment of forgetting everything. I cant tell you how many times I make up excuses for not remembering things. I have become the best lier unfortunately.
Anyway thank your for responses, I feel so alone in this situation although I have a wonderful husband and kids.
I have a few questions I would love help with:
1. How do you tell people what you have? I told one friend and she looked it up and didnt think it sounded that bad? Once again I felt like the crazy one.
2. Is it normal for a Lyme doctor to never do a psysical exam and start you on herbals before doing a
an exam? I am now so scared of doctors that I dont trust them anymore.
3. The doctor also doesnt think having an ECG or any type of neuro testing is necessary. Is that normal for Lyme doctors.
4. Does taking antibiotics the week before the Igenex for a bladder infection affect the results?

Thanks for the help on any of these questions.
Posted 3/18/2017 3:52 PM (GMT 0)

martha said...
I think what I should have said, was that the crazy one for thinking that was me! Somehow I thought everyone else was crazy but "I was truly sick". I now cant believe how horrible it was for me to think that. I can tell you that the worst of this how it has affected my brain. Its hard to read, write, and comprehend things, not to mention the embarssment of forgetting everything. I cant tell you how many times I make up excuses for not remembering things. I have become the best lier unfortunately.
Anyway thank your for responses, I feel so alone in this situation although I have a wonderful husband and kids.
I have a few questions I would love help with:
1. How do you tell people what you have? I told one friend and she looked it up and didnt think it sounded that bad? Once again I felt like the crazy one.
2. Is it normal for a Lyme doctor to never do a psysical exam and start you on herbals before doing a
an exam? I am now so scared of doctors that I dont trust them anymore.
3. The doctor also doesnt think having an ECG or any type of neuro testing is necessary. Is that normal for Lyme doctors.
4. Does taking antibiotics the week before the Igenex for a bladder infection affect the results?

Thanks for the help on any of these questions.

I seriously doubt anyone on here will hold that against you. What it took to admit to it shows us a lot about you - and I think that a lot of us wish we had something - nearly anything - other than these infections.

1) I tell people I have Lyme disease. I've had a few that have come back with "oh, I had that and took a couple of weeks of abx and was done with it" and I just respond with that I've had it long enough for it to invade every aspect of my body - brain, heart, nervous system, and more - and how happy I am that they didn't have to go through that. If they were to tell me it doesn't sound that bad, I would just tell them that they didn't look far enough into chronic Lyme. But, I'm very upfront with it all. I'm pretty much the same person 'out there' as I am on here. LOL!

2) Not many LLMD's do a full physical - they assume you searched them out, have seen quite a few doctors and have had plenty of useless physicals (which rarely reveal issues like we have). They may order blood tests, depending on what you have previously had done.

3) This would depend on what kinds of symptoms you are having. I've never had symptoms to suggest that I needed to have an EKG, so I've not had one. If you don't have significant neuro issues, they may not do neuro testing, or they may just assume that it won't show much. I had a bunch of neuro testing done over the years, and all it ever told the doctors is that I wasn't lying about how messed up my nerves were, but it didn't lead to anything else.

4) It's possible that the abx usage could mess with the results, but maybe not, as they will not be as strong as what is used for these infections. This would be just something to keep in mind when your test results come back - the only direction it may go that you need to be concerned about is that it may return with a negative result. You have the symptoms of these infections, including a bulls eye rash, which the only way to get that is to be infected with Lyme - so there's no doubt that you have at least Lyme, and most likely other infections as well.
Posted 5/11/2017 2:51 AM (GMT 0)
Thank you all for your very thoughtful responses. After I posted last (3 months ago) , my Lyme doctor put me on 3 antibiotics and Herbs. I can tell you that I felt like I was dying even more than before I started treatment. . . and I didnt think this was possible! Every symptom I had was 10 x worse and then added a few exra's. The worst part was the difficulty breathing, severe nausea and vomitting, and the excruciating headaches. Not to mention the heart palpitations and pain. I did EVERY Detox possible and still had to go off antibiotics 3 times. I am now on only 2 of them at half dose and doing very well.
When I was at my worst, my husband had me go back to my primary doctor that has known me for 10 years to do a complete work up to make sure I wasnt going to die from all the meds I was on. If you are thinking that was a bad idea, you are right! The doctor did a basic lyme test (even though I tested positive with Igenex)and all other generic tests. He wouldnt even look at the results from Igenex. He came back with I had asthma and severe depression. I still cant believe he dismissed everything I had told him. He said it was really all in my head and not real symptoms!!!! I actually started to believe he was right. I was so drained emotionally that I was not thinking clearly. If it was not because of people like you, giving to people like me, I dont think I would have made it.
I am writing this now, because I am getting better and I dont want others to give up either. I have a long battle ahead of me, but I wanted to say thank you!!! Thank you! Thank you!
Posted 5/11/2017 4:00 AM (GMT 0)
Sounds like you're on the right path.

Is your doctor treating the Lyme or the Babesiosis, or both?
Posted 5/11/2017 4:08 PM (GMT 0)
Well, we can't tell you how happy we are that you stuck with it and are making improvements!! The road is long and difficult, but it's worth it for every piece of ourselves we get back!

What are you doing for detoxing? Many doctors, even LLMD's, don't understand the importance of detoxing and supportive measures while we go through treatments - and that's where we can be of help.

If you need to start detoxing, we have some good information in our "new to Lyme?" thread, and here is another site that we suggest often: www.tiredoflyme.com/detox-methods

Do be sure to let us know how you are doing, and if you have any questions!! The learning curve for these infections is really quite steep, and it helps to lean on the understanding of those that have gone before you.
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