HealingWell
Search Close Search
☰

Why are all my tests coming back negative?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/18/2013 8:22 PM (GMT 0)
This should be good news, right?

But as you all know it isn't. I was really hoping that at least one co-infection would show up, since my LLMD suspects I have around 5!!!

Idk what to think, how accurate is the Igenex? I just hope my LLMD will continue treatment (I think he will, based on his clinical diagnosis).

However this is not good news in that I don't have proof for disability and insurance purposes.

I'm getting really worried.
Posted 2/18/2013 8:25 PM (GMT 0)
I'm in the same boat as you Lymer....but yes, confirmation would be a good thing.
Posted 2/18/2013 8:34 PM (GMT 0)
I'm so sorry opugirl :( Do you know what your LLMD is planning to do? More tests, continue treatment, etc?

My husband thinks I'm crazy every time I get depressed about tests coming back negative, so I don't even want to talk to him about this.

Why does this disease insist on making us look like liars and hypochondriacs???
Posted 2/18/2013 8:37 PM (GMT 0)
No idea....He hasn't said if he will treat me period which is why I'm so terrified. I'm scared I'm going to waste another two weeks praying to get into see him and he's going to "meh, why don't you go back to your GP and start from there." I'm not sure why I need it...I have a physician confirmation of an EM rash 5.5 years ago...in the Burrascano protocol that is EXTREMELY likely of Lyme.
Posted 2/18/2013 8:41 PM (GMT 0)
Absolutely it is opugirl!!! What kind of doctor are you seeing? Have you found an LLMD?
Posted 2/18/2013 8:42 PM (GMT 0)
The EM rash that is...sorry I think I'm having a major herx today and my thoughts are jumbled :-/
Posted 2/18/2013 8:49 PM (GMT 0)
Yes, that was the LLMD. But it was strange because it said on the paper. Today's diagnosis, Lyme disease but he was very quiet - listened to me, took my information. I wrote sort of a story/timeline of things that went on and he said " Ok, lets test you through Igenix." and that is pretty much all he said.
Posted 2/18/2013 8:54 PM (GMT 0)
That's kind of how it went with mine...he was a little more open than that, but not much. He sent me home with a paper that says "Lyme complex", with all of my Rx'es, supplements and diet info. He said 2-3 years treatment though, so I hope he will continue with that, despite the tests.

Do you have another LLMD around that you could see? I know that's much easier said than done...but just a back plan in case this one is going to treat you?

So you said this one didn't start you on any treatment yet?

I'm so sorry you're going through this. I'm having a day where this is all just making me so angry :(
Posted 2/18/2013 9:26 PM (GMT 0)
This is a utterly ridiculous situation but unfortunately "par" for the course when you're dealing with Lyme.

Under normal circumstances a patient would be delighted to be given the all clear if they had the suspicion that they were suffering from a serious disease.

Not the case with us!!!!!!

I, too tested negative the first time around and because I naively believed my doctor,I lost months of valuable time when I was not being treated.

My gut instinct proved to be correct,I changed doctor and found myself one who was willing to treat me without a positive test result.The irony was that the second test done at my insistance and while I was on antibiotics was positive not only for Lyme but also for Bartonellla.

The biggest problem that you have is with your disability claim although I must confess to having no idea how claims work in the US.

You seem to be a very capable and gutsy young lady,I really hope you find your answers soon and this search for answers finally comes to an end.

A negative result is most certainly not worth the paper it's printed on and that's the sad truth .

Tickled

Post Edited (TICKLEDPINK) : 2/18/2013 2:33:06 PM (GMT-7)

Posted 2/18/2013 10:49 PM (GMT 0)
I have been treated for the last 5 years, I have never yet tested positive (3 elisa & 2 western blots). I did, however, removed a tick that was well under my skin and guessing it was there for probably a few years. At that point, I had about 75% of the symptoms on the sympton list. Most of them have either gone away or significantly improved. Problem is that one of the symptoms that didn't get better, actually has got much worse, is complete body weakness. My low blood platelet count has also not improved. I have been trying to research to see if low platelet cound is indicative of one of the co-infections. Low platelets seem to be quite uncommon with Lymes disease, I have found very little on it. Quite confusing. My platelets were always normal until about 04', This is just about the same time I figured I got infected, so I am all but certain that platelet count is also a result of the tick bite in some way.
Posted 2/19/2013 1:26 AM (GMT 0)
Hi all,
The E.M. rash is completely diagnostic of Lyme disease, please don't let any doc tell you otherwise! It's quite literally the skin form of the disease, and Lyme is the only disease that can produce a bulls eye rash.

As for the tests, remember that not only are the tests poor, but they only test for 4 or 5 of the over 300 strains that are in this world, and there are 100 different strains in the U.S. alone! It's no wonder why so many end up with negative test results when all you have to do is have one of the 95 or 96 other strains of the bacteria!!

If the doc you are seeing is worth their salt (and worth your time and money), they will be treating both of you!! If not, I would heartily encourage you to find a LLMD or other type of doc that will!! I've been around both of you enough to know with the type of symptoms that you each have, you have these diseases.

I was on strong doses of Mino for a full 12 months before I finally had a positive WB for Lyme and Rocky Mountain Spotted Fever. So waiting for a positive test result isn't an option when you have enough symptoms.
Posted 2/19/2013 1:51 AM (GMT 0)
Traveler,

Very true! I guess I just had false hope that SOMETHING would come back positive. I hate to say it but I'm desperate at this point to qualify for disabilty. So now what, do I list "Lyme Complex" and my LLMD on my disability application or leave it out altogether?

I certainly don't want to risk getting him in any trouble, and I don't want social security to think I'm just "lying" to get disability.

For most people that need it, it's not a pleasant thing to have to ask for. I was always a "workaholic", so this process is NOT pleasant for me!

Anyway, enough of my soapbox.

Taysdad, I have all kinds of crazy issues going on with my bloodwork. I've had an oncologist, his nurse Practioner and an ER doctor all say it's pointing to a chronic infection. They all mentioned Lyme disease. Yet my rheumatologist quickly turned on me for seeking treatment for it! I would certainly agree that the low platlet count is relate to Lyme.

I hope you get some energy back soon. I can barely walk across the room without needing a break (and some days I can't!) I hope you show some improvement for this symptom soon. This one alone can be quite debilitating, can it not?

Thanks everyone for the advice/comments.

opugirl-don't give up until you find someone who will treat you!!! Traveler is absolutely right about that.

I spoke with someone that sees the same LLMD as me and she reassured me that he will continue to treat us despite the negative tests. Now keeping my disability benefits despite the negative tests, that's the current challenge.
Posted 2/20/2013 2:57 PM (GMT 0)
Lymer,
Are you already receiving Disability or are you trying to get it? Here are some links that may be of some value to you either way:
www.anapsid.org/cnd/disability/

www.disabilitysecrets.com/social-security-disability-lyme-disease.html

From what I understand, the best way to go about getting disability is to not claim Lyme disease, but the conditions that are already recognized - Fibro and things like that or if you can show that you are having significant enough issues with the musculoskelatal, cardio, mental (cognitive) issues or if you have what is known as 'inflammatory arthritis', according to the last link provided above.

It's worth going through these links to see if you can find some help, I think!!
Posted 2/20/2013 9:42 PM (GMT 0)
Traveler, I'm still trying to get it. I can use Fibro, Depression, Hypothyrodism on my application.

But do I leave off my LLMD altogether? It asks me to list all doctors, meds, tests etc
Posted 2/20/2013 9:49 PM (GMT 0)
I would suggest that you ask your LLMD if s/he wants to be mentioned. If they aren't going to support you in this and/or doesn't want to 'advertise' then I would just leave your LLMD off the list.
Posted 2/20/2013 9:58 PM (GMT 0)
Traveler, very true. I'll email him today. The problem is, my rheumatologist lost it when I told him I was being treated for Lyme disease. He won't return my calls or emails. So now I don't really have anyone in the medical community on my side in this application process.

The Rheumatologist would be the one to back up the Dx of all those other conditions.

I felt obligated to tell him about the abx and anti fungals I'm taking, since he also Rx'ed many of my meds. But had I known he was going to react the way he did I wouldn't have bothered going back to him!

Ugh!!!!
Posted 2/20/2013 10:00 PM (GMT 0)
Oh geez!! I'm so very sorry, Lymer!! Then make a plea to your LLMD, maybe s/he will be confident enough to allow you to use their name and back up your claim. You gotta figure these doc's are gutsy or they would be putting themselves on the firing line to begin with!
Posted 2/20/2013 10:08 PM (GMT 0)
That's very true and he DOES accept my insurance (which is state Medicaid), so...he must have some loopholes or some way to help me... At least I hope! :)

Thanks for your advice, I'll definitely contact him today! Btw I saw your post earlier about being in Arkansas, which part? I've been once, can't remember the name of the town but it wasn't too far from Memphis TN. We were on the lake, it was beautiful wherever I was! :)
Posted 2/20/2013 11:45 PM (GMT 0)
I sure hope s/he is willing to help!! Best of luck with that!

I live in the center of the northern most counties in Arkansas, up in what is known as the Ozark mountains.

You might have been on Greer's Ferry Lake, although it's hard for me to know,as there are a lot of lakes in this area!

I do love it here! I've lived in many places, from California to Northern Idaho where we were only 60 miles south of the Canadian border (boy was that ever cold!!!)to short stays in Indiana and Illinois - but this is the "home" I've searched for all my life.
✚ New Topic ✚ Reply