My Brother was diagnosed with ALS July 2017 . He took the standard lyme it was negative.
He has slurred speech, muscle wasting , weakness , & twitching .He went to a infectious disease doctor who took the Igenex & Quest lyme test , see results below. ID Doctor said he was 4 1/2 bands positive and needed to be 5 bands positive for lyme , however he wants to go over the results with ALS doctor . Also wants him to take the test over in January 2018 and see a LLMD.
18 ++ Positive
34 ++ Positive
58 +++ Positive
only bands 31 & 41KDA are present -Test 489 is recommended for confirmation .
41 Indeterminate- Test 488 is recommended for confirmation .
Phagocytophilum IgG <1:64
Rickettsia AB PNL WREFL
RMSF IGG -Negative
RMSF IGM - Negative
R.TYPHI IGG -Negative
R.TYPHI IGM -Negative
E. Chaffeensis AB IGG Negative
E.Chaffeensis AB IGM- Negative
Bartonella AB (IGG,M)W/RFL
B.HEndelae IgG Screen -Negative
B.Quintana IgG Screen -Negative
GOOD LORD. WILL SOMEONE PLEASE TELL ME WHAT GOOD ID DOCS ARE???? SERIOUSLY, WHY ARE THEY ON THIS PLANET OTHER THAN TO CAUSE MORE HARM?? There are a handful of useful ones.
Sorry - but that doc is very dangerous.
I agree w/ Girlie 100%. PLEASE get your dear brother to a LYME SPECIALIST. Please refer to the other good "Lyme masquerading as ALS" links and articles on this thread and do more research if you need to.
TIME IS OF THE ESSENCE. Do what you need to do to get him to an Lyme specialist who will get him on an aggressive abx protocol as fast as you can. Do everything you can to also incorporate a more comprehensive protocol that addresses other infections as well, GI health to protect from the abx and also as much detoxing as he can tolerate. MANY abx protocols for ALS are ineffective because all these MDs are doing is loading up the body with abx and not also supporting like we are all doing.
Please also post his WB results and we will show you that they are positive for Lyme. The ID doc has no idea what he's talking about
Generally, I post a very long explanation of why those tests are so inaccurate that studies now show it produces 50% false negatives. But since this is an ALS thread, I'll give you the cliff notes - but please ask more questions if you like and you can even email me.
The tests the CDC promotes and the interpretation protocols for the tests follow the CDC's very very strict disease surveillance guidelines that were created NOT to diagnose but to find all the similar Lyme manifestations (identical strains, for instance). Therefore, they will miss most cases - that's how the surveillance criteria was designed with very strict criteria that is very specific, not comprehensive.
The minimal band requirement supports the surveillance criteria, it does NOT help diagnose all cases of Lyme. These are serology tests so they're looking for your immune response to the Borrelia burgdorferi and/or its DNA. Some of the WB bands are Lyme-specific, including a couple of your bands. Your body can't possibly produce antibodies to something that isn't there. Kind of like you can't be sorta pregnant.
HIS TEST SHOWS LYME. PERIOD. It is not unlike many of the tests of members here. Do not wast time retesting to start treatment. He simply needs to get to a knowledgeable person to interpret the test correctly.
Even the CDC states on their website that the tests should not be used solely to diagnose Lyme and that it's a clinical diagnosis, albeit practically hidden so most MDs are clueless about
it or simply don't know how to clinically diagnose. But ID docs SHOULD KNOW BETTER. I'd love to point this out to that ID doc - maybe you can do it for me...
Buried at the very bottom of this web page is the CDC's recommendation that LD be a clinical diagnosis... took me 15 minutes to find and I spent two wks all over their website when I was learning about
Lyme: "Surveillance case definitions establish uniform criteria for disease reporting and should not be used as the sole criteria for establishing clinical diagnoses, determining the standard of care necessary for a particular patient, setting guidelines for quality assurance, or providing standards for reimbursement." www.cdc.gov/lyme/healthcare/index.html
Please don't hesitate to ask any questions -