posted
Hi, It is me again. Can you please help me understand how positive I am. Doc P. in CT says I am positive, but I need to check with all of you for my comfort. Have been screwed by docs in the past. Though I like him. He is a doc to me at this point.
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
If you never had the Lyme vaccine, this is a clear positive. 31 is very specific though can appear if someone was vaccinated. 39 is also specfic. With clinic symptoms, this is a very clear result.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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LostCityAgent
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posted
Thanks, I SHOULD MAKE THAT CLEAR --HAVE NOT HAD VACCINE-- Clinically, it seems so.
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LostCityAgent
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Can I please get more input here folks.
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Michelle M
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Member # 7200
posted
Dear John,
You are a funny fellow.
You are worried about maybe not really having lyme?
And you have not one, not two, but three, count 'em, three freaking stars next to a borrelia-specific band???
Am I seeing things here?
Do you know how many people with lyme would LOVE to have a test like yours to shove down their insurance company's throat???
Now, I thought you were worried because you maybe just had one "IND" band on your whole test or something, and the doctor was goin' out on a limb here or something.
But fer cryin out loud.
Band 31 is borrelia-specific and is screaming "LYME"!!!!
If you're in the mood to research in Pub Med, here's a clip from "And the Bands Played on" by the brilliant Art Doherty with PubMed research article references:
And I haven't even gotten started on your equivocal 39 band. Don't even get me going on that!!!
Take heart, John!
You Lymie!
Michelle
[ 27. May 2006, 11:39 PM: Message edited by: Michelle M ]
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
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Michelle, I love how you write. I am actually laughing right now. I have not done this in a while. I have been depressed. You have really helped me. I hope you know that.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Mornin' John.
Now you're beginning to see why I kept nagging you "Post your bands! Post your bands!"
That can be one very important little piece of paper.
Here's another little interesting fact to think on.
If you'd had your blood drawn anywhere else you probably would have been a false negative.
Guess why?
Most other labs don't even report on Band 31.
One of the most Borrelia-specific bands there is.
They're forbidden to report on it because it is so specific for lyme that that antibody was used for the failed LymeRix vaccine. So all these labs had to agree NOT to report that band. (Which is ridiculous, since not that many people had the vaccine.)
Now, the sensible thing would be for all labs to start reporting ALL bands again, and just ASK people if they've had the freaking vaccine, for God's sake. But NOOOO. The CDC would far rather just have a bunch of miserably sick people with false negative results on their western blots. That keeps the lyme numbers down nice and low.
Uh-oh. You're getting me started again. I feel it coming on.
I hope you're having a good day today!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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david1097
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Member # 3662
posted
With severe neurologic issues the question that you should ask your self (and your Dr.) is not "do I have Lyme". it should be what in addition (aka. co-infections) to Lyme do I have? THIS IS A VERY IMPORTANT QUESTION IF YOU HAVE BEEN DIAGNOSED WITH MS as coinfections usually make the neuro problems MUCH worse and need to be addressed.
Posts: 1184 | From north america | Registered: Feb 2003
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Michelle M
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Member # 7200
posted
quote:Originally posted by david1097: With severe neurologic issues the question that you should ask your self (and your Dr.) is not "do I have Lyme". it should be what in addition (aka. co-infections) to Lyme do I have? THIS IS A VERY IMPORTANT QUESTION IF YOU HAVE BEEN DIAGNOSED WITH MS as coinfections usually make the neuro problems MUCH worse and need to be addressed.
I agree with David! Man, do I second this big time! I have been also dx'd with MS and treating for neuroborreliosis for 10 months. My LLMD wanted me to do co-infection testing, but I looked at the clinical list of symptoms and then at my dwindling bank account and said 'Naw, I don't have any of that fancy stuff, I've just got plain ole lyme.'
DUH.
I about fell out of my chair when my LLMD's office called and said 'Guess what, your test was postive for babesia WA-1.'
Everyone please note my LLMD is totally blameless here and in fact, he intended to treat me even without testing because my headaches and neuro stuff was SO AWFUL he suspected babesia anyway. (Fortunately they are much smarter than I am.)
DO NOT BE AN IDIOT LIKE ME AND SKIP THIS STEP.
After some initially horrid head pain with Mepron/Zith which I thought was possibly going to kill me, I am feeling better, like my head is 10 pounds lighter.
Thanks for the good reminder, David!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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LostCityAgent
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WOW WOW WOW, Well, the lesions that look like MS can be caused by LD. The brain MRI report stated this clearly. "suspicious for MS plaques, other etiologies that can be considered are Lyme or CNS Vasculitis, clinical correlation advised." So looking at my pathology it does not seem to follow a traditional MS pattern. I wonder if I may have Epstein Barr (from my past) and/or Babasea (SP?). I am wondering why doc P. did not mention this to me? Anyway, I am glad that I am so LD sero. This helps defend a nondx MS. I escaped being dx MS, because inherently I knew something was not right though the evidence was mounting against me. I refused to go to Doctor Guarnaccia at the MS Center in CT. Thank God, I did not do that.
Michelle, I am having a good day. So do you have MS or LD? I bet it is LD/co-inf, that is it. MS is a symptom.
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi John,
There was a thread not long ago (can't remember the title) where several of us were discussing our MRI brain lesions. My LLMD confirmed that brain lesions can be caused by Lyme - I sent him the MRI on CD to look at.
I live in a city where the doctors don't believe Lyme exists, although I remember being bitten here and had a weird rash (didn't realize it was a tick at the time)so I've been through the possibly-MS misdiagnosis, too.
When I had the MRI after already haven started Lyme treatment with a LLMD in another part of the state, I had to tell the neurologist that I have Lyme and have a past history of chronic fatigue syndrome - both can cause lesions. Otherwise they'd start in on their MS bandwagon again.
I agree with the other posts about pursuing coinfections, even though the tests only can test for a couple of strains and there are many more.
For those of us with primarily neuro symptoms, be sure to read Dr. B's guidelines or buy his DVD (you can PM me if you want details) discussing some new strains of Bartonella-like organisms that he suspects may cause many of the CNS symptoms in Lyme patients who are not able to clear their Lyme symptoms with typical antibiotics.
As horrible as it is to have Lyme - and especially deal with insurance companies like mine that won't pay - I feel even sorrier for some MS patients I know. I keep recommending they get checked for Lyme by an LLMD just in case, but they won't budge on their diagnosis.
Take care, John, I always enjoy your posts.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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LostCityAgent
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Thanks Jill, Try to think of this: LD is not a horrible thing. We, you and I, and Michelle et al. Could all have malignant MS. Unable to speak, unable to walk..etc, etc. Indeed we have lost much, but not everything. We will stand up together with our diagnoses and we will beat it. And then Lyme will come down to judgment and face us with its army head on. It will be thrashed. I believe that Lyme can be beaten.
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