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ARE MY DOCTORS COVERING UP MY FINDINGS? if so WHY?

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Lyme Disease
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Posted 2/3/2014 5:46 AM (GMT 0)
LYME DISEASE-WESTERN BLOT - Past Results

July-2012 November-2013

Lyme 18 kD IgG ABSENT ABSENT
Lyme 23 kD IgG ABSENT ABSENT
Lyme 23 kD IgM ABSENT ABSENT
Lyme 28 kD IgG ABSENT ABSENT
Lyme 30 kD IgG ABSENT ABSENT
Lyme 39 kD IgG ABSENT ABSENT
Lyme 39 kD IgM *PRESENT* ABSENT
Lyme 41 kD IgG ABSENT *PRESENT*
Lyme 41 kD IgM *PRESENT* ABSENT
Lyme 45 kD IgG ABSENT ABSENT
Lyme 58 kD IgG ABSENT ABSENT
Lyme 66 kD IgG ABSENT ABSENT
Lyme 93 kD IgG ABSENT ABSENT
Lyme IgG WB Interp.
NEGATIVE NEGATIVE NEGATIVE
Lyme IgM WB Interp.
NEGATIVE *POSITIVE* NEGATIVE

I am feeling desperate and confused. I have been dealing with chronic pain for 2 years+ for a spine issue but all these other issues come up and they all fit the Lyme disease mold. I believe I am late stages with no treatment yet. I found my medical records which I've posted above. My two regular doctors refuse to call it Lyme, they're brushing it off as no big deal, easy for them to do they aren't the one suffering with brittle fingers to type here. Did you know one of his nurses said to me , after I told her how bad I was feeling, she said to me "well, you know it was only 100 years ago when people were only living to be 50" I found that so soo comforting considering I'm only 3 years shy of her deadline and I do mean Deadline. I wasn't offended, I was in too much pain to absorb her energy. When the doctor from the July 2012 report was made aware of it 16 months later he hasn't called me but his colleagues are minimizing it as no big deal. Its just an interpretation. No biggie. But why then do I feel otherwise. Can you please read the side by side Western blot and let me know, do I have Lyme Disease or not? Im in brain fog all the time, its so bad. Please help me. What doctor should I see next. I seen the allergist, pain management, D.O. Whats my next move to get well. I'm sick everyday. I've lost my family support and I'm broken hearted. My Mom hasn't given up on me yet. Thank you All.
Posted 2/3/2014 5:59 AM (GMT 0)
I'm a newby here myself, so not really the one to start giving out the advice, but I just wanted to tell you I'm sorry for how you are feeling and the suffering you endure.

I have read though, a lot, that 39kDa is probably specific to lyme and so the fact that it was present in the first test, I would think a lyme literate dr. would treat for lyme.
In the second it being absent makes me think of something I recently read (and heard), that the longer you have the infection the less likely you will test positive, b/c of the borrelia bacteria suppressing your immune system.

I'd say the thing to do is inquire, here on healingwell or anywhere you can, about where there is a lyme literate doctor nearest you and make your way there, b/c they won't brush you off. A good one will listen and help you get to the bottom of this.

I hope you find the right lyme doctor soon and begin your healing path!
Posted 2/3/2014 6:37 AM (GMT 0)
Thank you *stacestar* I appreciate your advise. What sort of doctor is a lyme specialist? how would I go about finding one? Physically I'm a text book case, I have 99% of the lyme symptoms for quite some time. In addition I get red bumpy rash like hives on my arms, hands, fingers, stomach, legs, feet,. Its a mystery that my doctors have no clue how to solve. I take photos and keep a journal. Wish I were healthy again. I'd live everyday like it were my last! I wanna dance in the streets...in the rain! maybe one day soon. I wish you well.
Posted 2/3/2014 7:35 AM (GMT 0)
A llmd (lyme literate medical doctor) is, from what I understand, someone who is more knowledgable about lyme and how to treat it.

I'm learning lots lately one thing I've learned is that there are kind of two ways of thinking about it among doctors, one that chronic lyme exists and can be treated with antibiotics, (some do natural methods too from what I hear/read)
and another thought among some doctors is that lyme isn't chronic and that you can't be helped with antibiotic treatment.

This is a loose description and others here know lots more than me, maybe when it's morning more people will jump on here and give more advice.

Bottom line is a lyme literate doctor might believe that you have lyme (I say might, b/c they know better than I do, but with that first test having a present on band 39, and the fact you were never treated I think, from what I've read, I bet a llmd might think it was/is possibly lyme.

To find a llmd through here, start another new post stating that you're looking for an llmd in ______, (wherever you live). The unfortunate thing is that llmd's aren't everywhere and so we all travel. I live in Iowa, and our llmd is a three hour drive. But if you're in a bigger city you may get lucky and have someone in your city.
I find the people here very supportive and helpful, but if no one replies with ideas (I think they will though), you could also try mdjunction.com the lyme forum. I say that, not b/c people here won't be able to help, but I think it's always good to ask as many people as you can when looking for a llmd, so as to get as much info as possible. And, I was a member on mdjunction.com before here (just hadn't heard of it first) and I found several llmd names there too.
Good luck to you in this. Stick around and get more information here. Like I said, the members are supportive and knowledgeable!
Posted 2/3/2014 8:03 AM (GMT 0)
Hi New-to-Lyme,

Welcome to our forum!!

I'm sorry you are feeling so bad... It is a good thing though to take the bull by the horns and start your lyme journey.

Many (most in fact) of us have been dealing with drs that diminish our symptoms, and are too lazy to look into them.

I don't know if you have read the thread on top of the Lyme page of this forum? The 'New to Lyme?.... Start here!' thread. It is packed with useful information, that I think everyone with Lyme or coinfections should read. There are symptom lists, detox information, helpful links, information on all kinds of treatment (antibiotics and herbals).

As for doctors. A good LLMD (Lyme Literate Medical Dr) is able to diagnose a patient not only by his/her blood results (which are very often false negative, cause testing is to this day very inaccurate), but also by the clinical manifestations.

I myself was tested negative by WB, only had positive 41 bands, which are not lyme specific. My dr was convinced though I had the infection. Months later he did another test (in Germany) that came back positive.

Stories like these are everywhere.

To find a good LLMD, I would advice you to make a new thread, like stacestar mentionned. 'Looking for LLMD in___'. Be sure though to enable your emailaddress (My Profile, Edit Profile, klick on 'Show my Emailaddress').

We are not allowed to post dr's names on the forum, people will send you the requested information by pm.

I don't know if you're able to post a pic of your rash?

Don't loose hope, study this disease if you're able to, and a good llmd will guide you along the way.

Good luck!

Marie

Posted 2/4/2014 1:49 AM (GMT 0)
Hi New-to-Lyme!
Welcome to our community! Thank God for mothers!
Band 39 is Lyme specific - no doubt about it. It indicates BmpA - Bacterial Membrane Protein 'A'. There's only one way for you to test positive for that - to have the Lyme bacteria inside of you.

Band 41 indicates the tail of a spirochete, and there are several of those, not just Lyme disease bacteria. So it's not specific for Lyme.

Can you tell us the area where you live - not the exact place, but maybe a large city near you and the state? We can help you find a Lyme Literate doctor that will be able to help you.

Do you know if you would rather treat with antibiotics or herbs/naturally? They are both very effective.

As the others are suggesting, please do read through the "New to Lyme? Start here!" thread as it's packed full of information you will likely need. Also please take a look at the symptom lists there. Lyme usually isn't the only infection passed at the time of the bite.

That's really wonderful that you have been keeping such good records of what's been going on! Be sure to take them with you when you go to your 1st appt!! It'll really help with your diagnosis.

The best part? You are not alone!! You have come to a place where we all understand and support one other and help all we can with suggestions of what worked for us and in sharing our stories.

Getting started detoxing and 'cleaning up' your diet (if need be) should be the first things on your list of "things to do". These may be things you are already doing so I won't go into any details just yet.
Posted 2/4/2014 3:06 AM (GMT 0)
I have nothing additionally to add regarding information or resources as the other great folks here have given you that. I just want to say welcome and how very sorry I am for how you feel and especially for the insensitive and unprofessional manner in which you have been treated. I would like to say I am surprised but I am not. It's a recurring pattern/story for so many of us. You are not alone and when you feel you are, remember we're here and we care and to keep coming back.

Hang in there. You can get better. You can.
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