Test Results are back- and they're negative

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Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/6/2009 10:46 AM (GMT -6)   
So my doctor got my test results back. I haven't seen them yet, but she gave me the general idea over the phone.
 
It was the standard Igenex test- there was a PCR portion, and the Western blot. All of it came back negative, except band 41 on the Western Blot. I'm nt sure how positive band 41 was, but it was there.
 
My lyme ND even asked me what other blood tests I had gotten- and when I said thyroid and blood glucose, she said maybe I should wait and see what those came back as before going back to see her. (I phoned, and they were both normal.)
 
So now I don't know what to do. It's not auto-immune ( I had that tested), or Thyroid, or diabeted, but nothing came back for the Lyme either.
 
I know Lyme test aren't great, but there has to be some point where you say "there just isn't enough here"- not everyone has Lyme, and there isn't enough evidence to say I have it...
 
I've started really second guessing things. When I thought it was Lyme, it was easy to go "Oh- I had a spider bite with a big red rash when this started- maybe it was a tick". But now- I'm back to thinking it was just a spider bite. And the tendonitis is just tendonitis...
 
And maybe I just fooled myself into thinking I felt worse for a couple of days when I started treatment...after all, I knew that is what would happen if it were Lyme- so maybe I just imagined it.
 
After all- if no one else even thinks anything is wrong with me, than why should I think it's Lyme when I have nothing to back me up? If treatment wasn't so expensive, I'd probably do it just in case- but now that I have no blood tests to back me up, my only option is the natural/herbal option. And that route is really expensive.
 
And now I have to go listen to my GP mock me for ever thinking it was Lyme...and then he'll tell me that there is nothing wrong with me. And I won't know what to think?? What if it is all in my head? And the twitching is just anxiety?
 
I think I'm going to go cry in the bathrooms at work now....
 
 

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/6/2009 11:05 AM (GMT -6)   
this is prolly my biggest fear.. after i get my results back and they are neg i won't know what to do..

doxy is so cheap, if you haven't started it just ask for a month worths.. it can't hurt.

i'm glad your neg.. i dunno.. i would just stay positive and try to block out the lyme. and see how it goes, if you start to get worse find a LLMD and go that route..

did you have an EM rash? if so, did you take a picture of it and show the PCP

Jendays247
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Date Joined Jul 2006
Total Posts : 652
   Posted 7/6/2009 11:28 AM (GMT -6)   
Okay, knowing everything I know right now...this is what I'd do if I were you: Like James said, I'd try to get treated for a short while, and then I would get retested. Depending on how long you have been sick - lyme can learn to hide and your immune system can also be so disturbed that you're not making any antibodies to show up on a test. Sometimes, a short course of antibiotics will kick you into gear and get your body to start fighting again. This could give you different test results.

If you can afford it, I'd go this route. Even for just one month. Doxy is really cheap, and Biaxin isn't too expensive either - my doctor gave me Biaxin over Doxy this time because of the sun and hot weather right now.
Current treatment (began June 10th 2009):
Biaxin 1000mg/day, Pulsing Flagyl 500mg/day 1 Week Every Month
 
 
 
"...and isn't it a kind of madness to be living by a code of silence when you've really got a lot to say...?"


scorpio1960
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Date Joined Jan 2009
Total Posts : 914
   Posted 7/6/2009 12:35 PM (GMT -6)   
Nicky, I am so sorry for what you are going through.

I have a feeling you didn't fool yourself into feeling worse and it was probably very real. You really need to see a llmd because a negative test does not mean much at all. LD is a clinical diagnosis and most if not all doctors who are not llmds will not make that diagnosis without a positive test.

Do you have health insurance? While llmd's usually don't accept insurance if you have out-of-network coverage you will get reimbursement.

If you don't have coverage or it doesn't allow out-of-network visits, maybe you can try the Zhang or Cowden protocol. I don't have any experience with either but know many have had good results. I'm not sure but I think Zhang does free phone consultations if you purchase his book. Here's the web site: http://www.sinomedresearch.org

Good luck

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 7/6/2009 1:02 PM (GMT -6)   
Nicky- I had negative testing too..at first my doctor was not going to treat me. Then he went to a Lyme conference and that changed his mind. I only had 41+++ on my test.
Now it is almost three years later and over 15 abx and I am still sick. I honestly feel I don't have Lyme and never did. I don't know what infected me but I have no evidence it was Lyme.
 
I know how discouraging it is to come up with no answers especially when we all like to have that evidence right in front of us. If I were you I would try the abx on a 3 month trial and see what happens. I should have stopped when I had no response instead I kept at it for over 2 years and I wish I hadn't. I would get my hopes up and nothing would happen.
 
I agree that just because nothing shows up on any tests that we assume we have Lyme. I am still searching for answers and won't quit until I find them but for me that doesn't include more treatment with abx..
 
I wish you luck and better health

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 7/6/2009 1:17 PM (GMT -6)   
Just because nothing is showing up doesn't mean nothing is wrong. You may have Lyme, you may have something else.

The only time I tested negative for Lyme was at Yale. The doc there told me that I shouldn't give up, something was wrong and that people like me fall through the cracks. He told me to keep searching and don't listen to those that said it was all in my head.

I was treated for Lyme for a few years and have gotten much better. While my life isn't what it used to be, I can still do most of what I want to do, including work.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/6/2009 2:25 PM (GMT -6)   
Thanks for all the advice,

Currently, I do not have a doctor willing to prescribe antibiotics, but I have access to natural treatment routes. Doing some form of treatment for a month and then re-testing does make sense. It's just kind of hard to stomach paying another $500 for the test!

Lyme is often mis-diagnosed as other things (Lupus, MS etc.), and so people who know about Lyme are eager to offer alternatives to people with those conditions.

BUT- isn't the other way round possible too? There are forms of Lupus that do not come up positive on blood tests. I didn't test positive for Lupus, but then again, I didn't test positive for Lyme.

Intuitively (if that is the right word) I still feel like I have Lyme...just from my experiences, and reading what others have said. But I was really hoping for proof.

My family is no longer supporting me in this. They were willing to go against conventional beliefs about Lyme in so far as Igenex, and long-term treatment, but they are unwilling to believe that you can have Lyme without a positive test result.

Scorpio- I have a lyme literate ND, and I have another appointment with her tommorow. So I'll be able to discuss this with her then. It's just that she sounded unsure when I talked to her over the phone. Hopefully, it'll be better in person.

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/6/2009 3:18 PM (GMT -6)   
Arg!
 
So I did more research, and it seems even the Lyme literate folk take band 41 to be meaningless unless it comes with another positive band! And most people consider it to be indicative of "early" Lyme- but I've had symptoms for 2 years.
 
I hate this! The last two years have been an endless (and expensive) list of things I don't have, and treatments that don't help me. I had gotten really good at not getting my hopes up, but my lymd doc was so nice, and understanding...
 
As silly as it sounds, thinking I had Lyme really was getting my hopes up- as it meant I had a chance to actually do something, and get better.  Now I feel like I'm back to square one, except worse, as I'll never really know if I have Lyme or not- and I've made my doctor think I'm crazy.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2009 3:34 PM (GMT -6)   
Nicky,

I'm so sorry Hun. I know how frustrating it can be to not have an answer. I did this for years. Gave up for a year then went looking again. Don't ever give up. Whether it is Lyme or something else, look for answers so you can get better.

If you don't mind me asking, what symptoms do you have?
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/6/2009 3:50 PM (GMT -6)   
Hi Cajun girl,

My symptoms are: Chronic tendonitis in achilles tendon (going on 2 years), generalized joint/tendon pain in ankles, shin pain (diagnosed as shin splints for lack of other explanation- also going on 2 years), carpal tunnel, tennis elbow, tendonitis in wrists, heel pain, mild joint pain in hips and knees, fatigue, chills, stomach problems, tingling/burning sensations in extremities, muscle twitching, brain fog, mood swings, disorientation, jaw pain, heel pain, vision problems...and I don't remember the rest right now. The joint pain is pretty mild- I usually don't need pain killers at all for it- but I'm only 20, and I'm not overweight. The more neurological symptoms have just come up in the last 4 months, but the rest has been around for two years.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2009 4:06 PM (GMT -6)   
Nicky,

Did your doctor test for co-infections? You can have a co-incection without having Lyme.
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/6/2009 6:22 PM (GMT -6)   
Hi Cajun Girl,

No- I haven't been tested for co-infections. My doctor suspects I have babesia and bartonella, but I haven't been tested for those yet.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2009 6:40 PM (GMT -6)   
I would definitely let your doctor test for those. Chills and night sweats could be babesia. Mood swings and foot pain are more bartonella.

Get tested. It can't hurt
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/6/2009 7:41 PM (GMT -6)   
Nicky, I am sorry too, because you just aren't getting any help, are you? Our job here is not to prove to you that you have Lyme. And your Dr's job is not to try to prove that you are wrong and he is right. His job is to help you and to find out what is wrong.

At your age, you shouldn't be suffering that list of symptoms! So something is wrong, right?

I don't want to try to prove that you have, or might have Lyme. But still, band 41, please correct me if I am wrong, signifies an infection by a spirochetal bacteria, of which there aren't that many different kinds. (or does it indicate other bacterias w/ a tail?) At any rate, it at least signifies an infection of some sort.

Just as you noted that some lyme literate folk don't believe this means lyme (and it doesn't. But it certainly warrants further testing and evaluation!), you can find piece after piece, written by MDs and researches as to why a person w/ lyme does not test positive. This seems to be a pretty strong consensus. There are MANY reasons why you tested negative, yet may have lyme.

I'm not convinced you have it, but you certainly have symptoms and 'the feeling'. I believe that w/ a 41+, your Dr should be willing to dig a little deeper. There are other lyme tests worth taking. And I'm sure there are plenty of non-lyme tests your MD should be considering.

Suspect TBI in 1972 (date corrected by Mother!) Attacked tonsils, pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/6/2009 7:57 PM (GMT -6)   
+Lyme,

Great advice.
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 7/7/2009 12:33 PM (GMT -6)   
I have my test results in my hands now! My lyme doc was much more positive in person- she said that she just wanted me to understand that my tests were not positive- not that she doesn't think I have Lyme.
 
The official results are:
IGM: Everything negative except 41kDa +
 
IGG: Everything negative except 39kDa IND and 41kDA ++
 
The Igenex test states that just one positive or IND double starred band can be clinically significant, and I have two... Also- I don't have syphillis or gum disease, so that makes the band 41 less likely to be a cross-reaction.
 
So, I'm definitely going to at least another month of treatment. I'm upping my dosage of BioCidin (the natural antimicrobial), and my doc may start me on artemisan (spelling??) in a couple of weeks if my night sweats etc. don't start to go away. I still have no one to prescribe antiobiotics, but apparently the supplement/meds I'm on are still effective- just slower.
 
My doc says she wouldn't even bother re-testing, but I'll have to wait and see how I feel before I decide. I think I agree with james et al on that one- if my only other option is to do nothing, than why not treat and see if it does anything.
 
And +Lyme- thanks for the advice. Unfortunately, I have days where I begin to wonder if my regular doc is right, and there really isn't anything wrong. But most of the time, I agree with you. I'm seeing my regular doc this week, and I am going to see if he can offer any other possibilites or tests I should have done (not that there are many I haven't already had!)
 
Lymekiller- No, and MRI is one of the few things I haven't had done. I would really like one, for my piece of mind, and I have even had a doctor recommend I get one- but the doctor was a sports med doctor, and so couldn't order it himself. I'm stuck going through my family doctor, who is being a pain in the butt.
 
Thanks again for all the advice and support. +Lyme- I may not be getting much help from the regular medical community, but everyone here has been wonderful and supportive. As you said- your job isn't to convince me I have Lyme- and I so far, no one has tried to do that. You've all just listened, and told me about your own experiences, and recommendations.  So thank you!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/7/2009 6:50 PM (GMT -6)   
Nicky,

Good luck with everything hun. I hope you find some answers soon.
2003:]2007: Diagnosed with Lyme. Didn't start treatment.
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements


**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**

Co-Moderator Lyme Disease Forum

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