posted
rhumatologist was questioning why the IGG was neg. Looks like I had 4 bands not 5 which they say is needed for pos result?? They where thinking I may have a Motor neuron disease
Posts: 355 | From NY | Registered: Jan 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
It sounds really likely that Lyme is the issue. Negative IgG is by CDC standards which is not the standard used by most doctors that are Lyme-literate. I would definitely get a LLMD before you do anything else. It is critical and this is your life....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
WHAT SCOTT SAID!
That same rheumie would look at positive bands on IgM (the test for current infection) and make a stupid claim that having bands 31 and 34 positive aren't enough. Guaranteed. 'Cause it's not "CDC positive" -- therefore it must be something else.
Run away! He doesn't know what he's talking about.
Read the Newbie Links on Western Blot testing.
Then stop seeing this doctor, who is clueless. Find an LLMD.
Specific bands on western blot CANNOT react or turn positive to anything else other than the presence of borrelia burgdorferi. Doesn't matter how many bands you've got if they're certain bands and they match up with your symptoms.
Good luck.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
you can't have just a little lyme, just like you can't be a little pregnant.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
Which Bands. The CDC are a pack of total idiots. Nobody with a grain of understanding of this disease takes them seriously any more. If you have four positive bands are they perhaps 34, 39 or 31. If one is 39 you do not need anything else. As an earlier writer has noted certain of these bands can be created only as a response to an infection of borrelia. What in the world are you doing with four positive bands and a test still be negative. That makes no sense. Further which bands, if any, were equivocal? You may e mail me privately if you wish. Also consult Dr. Charles Crist's essay on Western Blot. hope this helps. The ducks sure aren't. Cheers. Thomas Parkman
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
Sorry somehow my post got put into 2 sections. My results were
23-25 ++ 31 ++ 34 ++ IND 39 ++ 41 ++ 66 + 93 + The IGG was Neg except for band 41 which was ind. THANKS FOR THE HELP
Posts: 355 | From NY | Registered: Jan 2006
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Dr. Jones says: "There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease."
So, looks like you're positive for Lyme! Hope this helps.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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BostonLyme2005
Unregistered
posted
Here is a copy of my Igenex WB results as well.
Hi Guys,
I needed to do this again, so please bare with me, ok.
What do you think on these results? I have read some articles and know what others think, but always love to hear your voices.
If I was suffering from CFS/Fibro, would I have results like these from the WB testing?
Please remember I worked in a Humane Society wher we were informed about the presence of ticks. Some dogs had Lyme Disease, they were in seperate rooms.
I went there for 6-7 weeks in a row, always brushing off insects of all kinds, all over me, my clothes, in my car, hair, ears, etc.
I would on a daily basis brush them off me and the dogs..We would walk through the woods, Deers in the area as well.
Placing all this info together, I feel it is Lyme Disease!
Igenex IGM Result IND CDC/NYS Result NEG
18 KDa + 41 KDa + 58 KDa + 66 KDa + 30 KDa IND
All other bands are -
Igenex IGG Result Neg CDC/NYS Result NEG
41 KDa ++ 58 KDa + 39 KDa IND 23-25 KDa IND
All other bands are -
PCR's are - Serum - Whole Blood - Both Plasmid & Genomic
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Sorry,
That ruemy definately does not know about Lyme. Investigate your Lyme option before this duck puts you on steriods.
I went to the top ruemy on Long Island in Great Neck. What an *** !!!!! This was a waste of time and $20.00 copay.
I still to this day hate him. Just my opinion.
He didn't do any tests. and proclaimed that I didn't have Lyme becuase I had already had a few months of Biaxin. Laughing in my face. Jerk.
posted
Please understand the difference between "surveillence" and "diagnostic".
The CDC issued standards for surveillance at 3 or 4 out of 5 IGM and 5 out of 10 for IGG or some such, to get an idea of where the disease was located. NOT TO BE USED FOR DIAGNOSTIC PURPOSES
The standard for the CDC diagnoses is "clinical", meaning the doctor may begin treatment based of his findings during the examination in his office of the symptom presented.
Blood testing is then done to confirm clinical dx.
Any doctor you visit that does not know this should be informed. If he doesn't accept it, report him to your health board.
The CDC issued this correction of information in early 2001 after Bush signed an executive order requesting the SG to make this change public.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey 6t5frane
Like someone stated earlier. There is no such thing as having a little lyme.
You have lyme disease whether or not your uninformed rhumy will admitt it or not.
Times a tickin and the sooner you get a LLD and start treatment the sooner you will get better.
Lyme doesn't go away with time. It will only get worse.
If you need help finding a LLD , you can post the question here and people can pm you with referals,
Take care and for goodness sake get your lyme treated. Please do the right thing now, the rest of your life is at stake. dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Thanks Dana, Right now I have twitching in my calves and foot?? I have been diagnosed with Rhematoid Arthritis for 16 years, but since July new symptoms have arrived. My legs feel like jello
Posts: 355 | From NY | Registered: Jan 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by 6t5frlane: Thanks Dana, Right now I have twitching in my calves and foot?? I have been diagnosed with Rhematoid Arthritis for 16 years, but since July new symptoms have arrived. My legs feel like jello
Your tests are "off the chart" positive for lyme. Post over in the "Seeking a doctor" area of the forum and someone will PM you a knowledgeable doc contact info.
Bostonlyme, your tests show Bb bacteria is active as well.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Thanks to all. Just curious. Why Igenx " off the charts and 2 otherv tests local were neg??
Posts: 355 | From NY | Registered: Jan 2006
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posted
You say more knowledgeable but isn't a Western Blot test the same anywhere???
Posts: 355 | From NY | Registered: Jan 2006
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
6t5frlane (nice car by the way):
No- western blots are not standardized across the country, or for that matter from lab to lab. The sensitivity and specificity are not the same lab to lab either.
Very few conventional Dr.s will accept the results from a "reference" lab (Igenex). Dr.s working for large teaching hospitals or Universities all have their blood contacts with one specific lab and won't accept the results from any other lab.
But remember this: The positive conventional criteria is set SO TIGHT for a positive that it's VERY hard for someone who's had Lyme for a long time to satisfy this critera becuase Lyme supresses the immune system in some people.
Medicine is a business- and a pretty shoddy business in my opinion.
You're in for a rough ride- as the conventional Docs will tell you you don't have Lyme and you'll be confused and scared every time you buck them.
I would see a good Lyme literate Dr. Your tests clearly show you have Lyme. Good Luck. Barb
Posts: 1875 | From VT | Registered: Oct 2002
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posted
After looking at fax from Dr it looks like band 31 is neg not pos. Crappy fax copy...sorry. does this cahnge anything?
Posts: 355 | From NY | Registered: Jan 2006
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posted
Sorry the copy was bad. Band 31 is NEG not POS, everything else is the same as posted. Does this change anything. Thanks. Sorry for all the ?'s
Posts: 355 | From NY | Registered: Jan 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by 6t5frlane: Sorry the copy was bad. Band 31 is NEG not POS, everything else is the same as posted. Does this change anything. Thanks. Sorry for all the ?'s
Does it change anything ? Yes. You need to put new ink in your fax.
As far as being infected with lyme ? It doesn't change a thing, you have it.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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