posted
A dear friend with ALS (for 3 years) has just gotten Igenex WB results back and they have asked me to help interpret. His PCP said he was negative. It shocks me that he was never tested previously for lyme...in fact their neurologist never even mentioned it! I have read all the info that explains WB results....I guess I just want to hear from the experts and I certainly don't want to impart any false hopes but I see every reason to pursue a LLMD. Agree or disagree?? Thanks xo Betsy
IgM 31 indet.
IgG 30 + 41 ++ 58 + 34 indet. 39 indet.
Posts: 107 | From VA | Registered: Mar 2005
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
From the beloved Dr. J in CT:
Addendum Regarding Lyme Serology
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.
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 6000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
posted
He/she should absolutely pursue the LLMD. His other choice is to sit there and allow the progress to kill him.
Lyme can be treated, ALS can not even thought they are most probably the same thing.
Lyme testing is not in the differential dx for ALS and no neuro will test nor do very many even know about lyme.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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In the above explanation, Dr C of MO explains how an "equivocal" or "indeterminate" as it is now called can be considered as a positive because they "are seeing SOMETHING" when reading the bands.
So....consider these ...
31 is a "classic hallmark borreliosis antibody" 41 is "the most common borreliosis antibody" 34 is a "classic hallmark borreliosis antibody" 39 is "the most specific antibody for borreliosis of all"
LYME in big fat letters
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Pursue a LLMD Now!
I met at my LLMDs office 3 different people diagnosed with ALS over the years I have lost track of them because they started getting better and I paid thm no mind after that. Get your buddy a good LLMD
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Thank you all so much! We need prayers for Dick that he does have lyme and will respond to antibiotics...he is the most terrific man and has taken a real spiral down with his illness. But after 3 years from his initial ALS diagnosis, he really doesn't seem to be at the anticipated place with that disease. I will immediately put them in touch with my llmd! You all are so great! xoxoxo Betsy
Posts: 107 | From VA | Registered: Mar 2005
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