posted
I just wanted to share my experience at Boston Childrens Hospital because I left feeling very frustrated and confused. My two children and I have lyme disease. We're now dating my lyme to an illness I had in my teens and my children most likely got it from me in utero. Their lyme went undiagnosed for years as well and both boys have been treated with 2 yrs of antibiotics and are still under the care of Dr. J.
My 14 year old son began having some serious psychological symptoms (including OCD) this past year and was recently diagnosed with Aspergers Syndrome. He also has candida that we can't seem to shake and strep levels that escalated as his OCD symptoms became more pronouned. We suspected PANDAS and saw a neurologist in Boston, familiar with this condition. We were hoping he would suggest IVIG. Instead he wanted us to see an infectious disease specialist. This "specialist" took all of 4 minutes to examine my son, never took a drop of blood and declared that my son doesn't have lyme disease and doubted he ever did. He said he's only seen one case of acquiring the disease in utero and that baby was born with a rash. So, according to him, it was highly unlikely that either of my children were born with it.
After reviewing his previous lyme tests he told me that when a Western Blot is positive for IgM but negative for IgG the result is actually a false positive. Both of my sons' Western Blots have always been positive for IgM but negative for IgG. My younger son has also tested PCR positive on several occasions which I understand is harder to dispute.
I know there are many cases of false negatives in lyme testing but aren't false positives fairly rare?
Posts: 18 | From RI | Registered: Jan 2002
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posted
Wow. I can tell you my son and many other children I know were also born with lyme. What an idiot to tell you that information. What if you actually had believed it as some do? Let shear it for the great Moms out there. Ones that believe in their children and follow their instincts.
Posts: 547 | From Maryland | Registered: Mar 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
PCR test is very specific; if it is positive and it's done by a decent lab, it is very significant, indicating current infection without a doubt. The specificity is one in 1,000,000,000,000,000,000,000,000.
Every biology-related college (including medical school) graduate should know this, unless he is idiot.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Boston Teaching hospitals are agruably the least LL around. Remember, you have Steere & Klempner in the area and most of the IDs & Rheums subscribe to the CDC & IDSA guidlines. It's an uphill battle.
Hence the significance of getting the Colubia Ctr open & funded in NYC.
[ 20. August 2006, 01:41 PM: Message edited by: Foggy ]
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
CJM, I'm sorry you and your children are going through this. The Boston hosptials are in my experience the most lyme illerate places.
Most of my work up was done at two of the major teaching hospitals. I was seen by a prominent infectious disease doctor in 2003, when I had long term crushing fatigue, brain fog, myalgias, and some joint pain. My Western blot came back with three bands including one lyme specific band.
I went without a diagnois or treatment until I saw LLMDS in CT and NY.
Good luck .
[ 20. August 2006, 02:34 PM: Message edited by: serendipity ]
Posts: 628 | From the south | Registered: Dec 2005
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posted
I saw a neurologist in Boston who told me I don't have neurological lyme disease because it is extremely rare.
When I saw my LLMD, not only did he tell me I have neurological lyme disease but also told me that it is is extremely common, that the majority of his lyme patients have it.
Seems like neurologists who are not specialists in Lyme Disease like to spout off their mouths about things they know nothing about.
Boston hospitals are notorious for this. Take what they say with a grain of salt.
Posts: 366 | From MA | Registered: Apr 2006
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-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by alliebridge: Seems like neurologists who are not specialists in Lyme Disease like to spout off their mouths about things they know nothing about.
Boston hospitals are notorious for this. Take what they say with a grain of salt.
Yes, Bstn Neuros are the WORST for Lyme. I have more scripts for SSRIs from those jerks than Big Papi has HRs.
Here are a few of the crap Neuro responses I got:
"Lyme testing is highly reliable." "A week or 2 of Doxy should've cured you." "You have a chemical imbalance and an overactive neuro system, not chronic Lyme." "There's no such thing as chronic Lyme, your have have CFS & Fibro, Elavil is what you need."
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
for what its worth
I had a negative PCR and a positive western Blot. Both done at the same time.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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These infectious disease doctors may be very competent and able to help you with any number of infections except lyme disease. For LD for some bizarre reason or set of reasons they do not have a clue and you cannot reason with them. My favorite quote: "the most dangerous man in the world is an intelligent fool" While these ducks may not be that in other areas they fit the bill where LD is concerned. You are paying for this idiot and you are spending your time and wasting it. Get thee to somebody who can help you. And tell this duck to go fly a kite. Cheers.
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
Thanks so much for all your replies and confirming what I was feeling. Thanks too for the links to all the articles. I'm tempted to write him a letter with some of the medical literature and copies of my son's tests (he also tested PCR positive to Bartonella and Babesiosis which I feel is further proof he has lyme). I know it probably won't do any good but maybe he'll think twice before being so quick to dismiss this disease in the future.
Thanks again for your replies and support.
Posts: 18 | From RI | Registered: Jan 2002
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posted
I am also IGM positive, IGG negative here. My GP also thought it was a false positive.
Both my childrens' pediatrician and Dr. Harris at Igenex said that in some infections, if it has been around for a while, the ONLY antibody that will show positive is IGM. He mentioned another couple of examples, don't remember at the moment which. Maybe paro-virus?
Both also suggested that I see a doctor who understands antibodies. Our pediatrician also sees adults. Guess who his soon to be newest patient is?? Posts: 169 | From former Philadelphian | Registered: Jun 2006
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posted
I tested PCR positve on blood and urine by MDL lab on 2 different occassions.
Western blot was negative except for band 41.
Insurance company denied treatment.....stated "no evidence of Lyme disease."
Unless western blot is positive by CDC standards, they think there is no way you can have Lyme!
Very frustrating to say the least.
Posts: 195 | From NJ | Registered: Nov 2003
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
In my personal experience, IDs will just leave you with emotional scars.
You'll get more satisfaction if you go into your yard and yell your sympotoms into a bucket.
IDs left me believing that I just had mental problems.
I think that they tend to transfer the pos/neg standards from the other diseases they treat to Lyme & coinfections.
These diseases are evasive and don't test the same way.
I would highly recommend that, with regard to Lyme and TB coinfections, you let what the IDs say go in one ear & out the other.
Good Luck! Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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