posted
After 2-3 docs and blood tests and an MRI my son is going to see an LLMD. I didn't want to jump to the Lyme conclusion, but I feel that now I have to pursue it. AFter headaches for about a year (not constant, just occasional) and a CDC ng WB (Band 41 prsent on Igg)I took him to a neurologist.
She said he was fine could be migraines. I still kept lyme in the back of my mind. She said to come back if anything else happened or his headaches got worse. Then twice his head hurt so bad that he threw up so I took him back and she sent him for MRI.
There is an 8mm lesion on his brain. Again I was told that it was nothing to worry about. Said it could just go away and to watch for MS like symptoms.
My heart is breaking for my son. I am hoping that the neuro is right, but in my gut I don't think she is. Please pray that this horrific disease does not take over my son's life like it did for me. Yes I am better now but I went through hell and back to get here.
Just venting...thanks for listening...
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
Well, you live in a hyperendemic state, so lyme should certainly be considered, and it does not sound like your current medical people will do that in an educated way.
Good luck with the appt.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Exactly lou...I want it considered and not dismissed because his WB came back neg.
Thanks
Posts: 193 | From New Jersey | Registered: Oct 2008
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
Please also have your son tested for Mycoplasma pneumonia and strep.
The strep tests are blood tests.
(Anti-D-NaseB and ASO titres).
My son also had headaches and we knew something was wrong. Please don't listen to the Dr's that told you not to worry about it. Keep looking - kids don't typically get headaches on a regualr basis.
Posts: 1408 | From Tx | Registered: Nov 2009
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posted
Thanks monintexas...will write it down and bring it with me. I don't know anything about this dr. except that he is an LLMD.
What other symptoms did your son have? My son's other sx are vague and can be attributed to some other things.
Posts: 193 | From New Jersey | Registered: Oct 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
On WB band 41 from Dr. J the LLMD Blog
The 41 band is non-specific. It is meaningless by itself. Haven't we all heard this. It cross reacts with other spirochetes. Maybe not.
Early studies, with Allen Steere as a co-author, showed that the 41 band was the band that was most prevalent and showed up earliest in the course of Lyme infection.
The CDC considers it specific. It is one of only 3 IgM bands tested in their surveillance test. IgeneX considers it specific, it is marked with a double asterisk.
I have reviewing the literature. Cross reactivity studies were done with syphilis. This does occur. How many syphilis patients have I seen in suburban practice in the last 20 years? One. Syphilis is easy to rule out.
What about other spriochetal diseases? Yes. It can cross react with leptospirosis, rat bite fever and relapsing fever. What did Steere have to say? These diseases can be ruled out by clinical presentations.
Not out only are these diseases very rare, but they cause a severe, sometimes life threatening illness which clinically looks nothing like Lyme. I am quoting a paper co-authored by Allen Steere, circa 1984.
Current papers like to say that the 41band cross may reacts with dental spirochetes. Does the evidence support this? The answer is no.
The primary dental spirochete is Treponema denticola. It is present in patients with periodontal infections. It is not particularly antigenic since it is protected within biofilms.
The DNA structure of this spirochete has been worked out. It is very different from Borrelia. The 41 band reacts to a flagellum protein of Borrelia, the Lyme spirochete. The flagellum proteins of T. denticola are quite different from those of Borrelia. They are antigenically different.
This was tough to find, but here it is: The WB or immunoblot bands that are specific for T. denticola flagelin proteints are: 38kd, 53kd and 72kd. In fact, the best known dental spirochete does not react with the 41 band.
Author after author continues to state that the Lyme 41 band may occur beause of cross reactivity with dental spirochetes.
It is always qualified with the word "may." There is no evidence to support this theory.
All are in agreement that the 41band is specific for spirochetes.
The other spirochetes known to cause this cross reaction can easily be ruled out!
You only have a 41 band. The only question which has to answered is: How do you explain its appearance if it not due to Lyme disease?
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Tim...that is the question I want answered! There is definite exposure and I am hoping I finally found the dr. to prove it. Thanks for the info!!
Posts: 193 | From New Jersey | Registered: Oct 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Lymephobic:
It is my 11 year old daughter who has lyme and babs. Even though we are from CT we were uneducated about Lyme and the controversy. We had 8 MD's, 2 childrens hosipitals, various tests (all negative including 2 elisa and 1 WB for lyme).
We finally learned you need the band readings and went to Dr. J, had a WB and had IgG 30 and 41 positive with 34 & 39 IND. So this was enough for me to know Lyme was one of the underlying causes.
Note, the Lyme Expert Pediatric Infectious Disease MD at the Prestigious Childrens Hosipital that we had seen 3 times over 4 months had stated "I know Lyme and your daughter doesn't have Lyme Disease" while also indicating some of her symptoms were psychosomatic. If was from this appointment I knew something was wrong in the medical community, just didn't know what it was.
Band 41 was good enough for me to trust Dr. J in treating for Lyme.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
lymephobic---you are doing the right thing to be cautious. momintexas is right. Kids shouldn't have headaches.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Thanks everyone...it bothers me so much that 2 doctors would just dismiss headaches and a lesion. It just doesn't make any sense to me.
t9im - I hope your daughter is doing better.
Posts: 193 | From New Jersey | Registered: Oct 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Lymephobic:
Thank you yes she has improved under Dr. J's care but it (as all here with chronic lyme can attest) it is not an easy road.
She has been on treatments now for 15 months (sick for 23 months now) but I will guess still another year to go. I do think the babs is done.
Good luck as a parent this is so difficult (of course worse for the child). By the time we saw Dr. J we didn't trust any MD which is way the band reading was important as I was not initially trusting of Dr. J.
Now we realize Dr. J has put us on the right path and he is going through so much by fighting the main stream medical communtiy.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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