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?
Posted by Lymeindunkirk (Member # 7118) on :
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.
Posted by Lymetoo (Member # 743) on :
A PCR test is irrefutable.
REad what dr C of MO has to say about the IgG and IgM. Your children have Lyme. Follow your instincts and continue their treatments.
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.
Posted by Foggy (Member # 1584) on :
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 ]
Posted by serendipity (Member # 8474) on :
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 ]
Posted by alliebridge (Member # 9103) on :
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.
Posted by JeffM (Member # 8919) on :
Fire this guy and find another doctor.
Posted by Foggy (Member # 1584) on :
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."
Posted by 5dana8 (Member # 7935) on :
for what its worth
I had a negative PCR and a positive western Blot. Both done at the same time.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 5dana8: for what its worth
I had a negative PCR and a positive western Blot. Both done at the same time.
PCR's can come back falsely negative, but if it's POSITIVE there in NO refuting it as David said.
Posted by Thomas Parkman (Member # 3669) on :
Dear Heart,
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.
Posted by CJM (Member # 2072) on :
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.
Posted by am36 (Member # 9409) on :
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?? Posted by Pitnum (Member # 4906) on :
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.
Posted by AliG (Member # 9734) on :
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.
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