4 ms·

How are you getting checked? I understood (perhaps wrongly) that the blood tests are only accurate well beyond the window with which the medications are effecti

by voisin 5y ago

How are you getting checked? I understood (perhaps wrongly) that the blood tests are only accurate well beyond the window with which the medications are effective, creating a chicken and egg issue.

inter_netuser 5y ago
why is there a window? people report recovery after several years with an appropriate treatment.
- voisin 5y ago
  Recovery with Lyme isn’t always forever. It apparently goes into remission and comes back later. Not sure if anyone knows why or how it does that. AFAIK it is only cured if treated very quickly, before the blood tests are accurate.
- saalweachter 5y ago
  The bacteria can cause long-lasting damage, basically, and the symptoms of Lyme disease can just be that damage.
  - inter_netuser 5y ago
    Yes, that can be on me situation. The frontiers study shows bacteria persists inside the brain.
- istjohn 5y ago
  The bacteria migrates throughout the body over time, including into the brain and spine, so it's easier to eliminate when treated promptly.
ChrisMarshallNY 5y ago
Not exactly sure. I made an appointment. First time I've done that. It may just be a "put it on the record" visit, with follow-ups in some months. My relative didn't find out, until he had a cantaloupe for a kneecap. They tested the fluid, and found lots of Lyme. He's always getting bit. Deer pass through his backyard, on a regular. He said the treatment was anticlimactic. A course of oral antibiotics.
ce4 5y ago
There's no definitive accredited lab check as far as I know. At least here in Germany the official serologic tests for late stage Lyme can come back negative for years until the disease really progresses badly - even cerebrospinal fluid results may be normal despite neurological symptoms. My specialist uses elispot lab tests for Borrelia b. OspA, antigen and LFA-1 markers. Other practitioners use westernblot lab results and differential diagnosis.
- inter_netuser 5y ago
  have you seen recent immunostaining result? albeit in research, amazingly you can actually see the bacteria. They claim it can be cultured too. https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
  - alfon 5y ago
    Thanks for that link, super interesting. Check out also Dualdur, received 3MEur from EU in 2018. https://lymediagnostics.com/why-dd/ https://lymediagnostics.com/why-dd/
serial_dev 5y ago
After a couple of days in the mountains, I found four ticks, and one bite started to turn red after two weeks. I went to the doctor, she said the tests at this phase are unreliable, my bite could be Lyme, but could be something else too (the bulls eye rings didn't form yet). She said the pragmatic approach is too treat it as if it was Lyme and take antibiotics. It's better to take some antibiotics than wait for the symptoms (which are not always easy to assign to lyme).
rgrieselhuber 5y ago
I've heard that Fry Labs is one of the only labs to do blood testing, but I haven't tried them myself: https://frylabs.com/resources/lyme-disease-and-detection/ https://frylabs.com/resources/lyme-disease-and-detection/
- computer23 5y ago
  Fry Labs is listed on Quackwatch's list of "Laboratories Doing Nonstandard Laboratory Tests": https://quackwatch.org/related/tests/nonstandard/ https://quackwatch.org/related/tests/nonstandard/ The CDC warns against nonstandard testing: https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/index.html https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/i... You'd be surprised how little regulation that some lab testing gets: https://sciencebasedmedicine.org/new-fda-regulatory-role-threatens-bogus-diagnostic-tests/ https://sciencebasedmedicine.org/new-fda-regulatory-role-thr... There are a lot more predatory labs than Theranos out there...

by voisin 5y ago

How are you getting checked? I understood (perhaps wrongly) that the blood tests are only accurate well beyond the window with which the medications are effective, creating a chicken and egg issue.

inter_netuser 5y ago

why is there a window? people report recovery after several years with an appropriate treatment.

voisin 5y ago
Recovery with Lyme isn’t always forever. It apparently goes into remission and comes back later. Not sure if anyone knows why or how it does that. AFAIK it is only cured if treated very quickly, before the blood tests are accurate.
saalweachter 5y ago
The bacteria can cause long-lasting damage, basically, and the symptoms of Lyme disease can just be that damage.
- inter_netuser 5y ago
  Yes, that can be on me situation. The frontiers study shows bacteria persists inside the brain.
istjohn 5y ago
The bacteria migrates throughout the body over time, including into the brain and spine, so it's easier to eliminate when treated promptly.

ChrisMarshallNY 5y ago

Not exactly sure. I made an appointment. First time I've done that. It may just be a "put it on the record" visit, with follow-ups in some months. My relative didn't find out, until he had a cantaloupe for a kneecap. They tested the fluid, and found lots of Lyme. He's always getting bit. Deer pass through his backyard, on a regular. He said the treatment was anticlimactic. A course of oral antibiotics.

ce4 5y ago

There's no definitive accredited lab check as far as I know. At least here in Germany the official serologic tests for late stage Lyme can come back negative for years until the disease really progresses badly - even cerebrospinal fluid results may be normal despite neurological symptoms. My specialist uses elispot lab tests for Borrelia b. OspA, antigen and LFA-1 markers. Other practitioners use westernblot lab results and differential diagnosis.

inter_netuser 5y ago
have you seen recent immunostaining result? albeit in research, amazingly you can actually see the bacteria. They claim it can be cultured too. https://www.frontiersin.org/articles/10.3389/fneur.2021.628045/full https://www.frontiersin.org/articles/10.3389/fneur.2021.6280...
- alfon 5y ago
  Thanks for that link, super interesting. Check out also Dualdur, received 3MEur from EU in 2018. https://lymediagnostics.com/why-dd/ https://lymediagnostics.com/why-dd/

serial_dev 5y ago

After a couple of days in the mountains, I found four ticks, and one bite started to turn red after two weeks. I went to the doctor, she said the tests at this phase are unreliable, my bite could be Lyme, but could be something else too (the bulls eye rings didn't form yet). She said the pragmatic approach is too treat it as if it was Lyme and take antibiotics. It's better to take some antibiotics than wait for the symptoms (which are not always easy to assign to lyme).

rgrieselhuber 5y ago

I've heard that Fry Labs is one of the only labs to do blood testing, but I haven't tried them myself: https://frylabs.com/resources/lyme-disease-and-detection/ https://frylabs.com/resources/lyme-disease-and-detection/

computer23 5y ago
Fry Labs is listed on Quackwatch's list of "Laboratories Doing Nonstandard Laboratory Tests": https://quackwatch.org/related/tests/nonstandard/ https://quackwatch.org/related/tests/nonstandard/ The CDC warns against nonstandard testing: https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/index.html https://www.cdc.gov/lyme/diagnosistesting/labtest/otherlab/i... You'd be surprised how little regulation that some lab testing gets: https://sciencebasedmedicine.org/new-fda-regulatory-role-threatens-bogus-diagnostic-tests/ https://sciencebasedmedicine.org/new-fda-regulatory-role-thr... There are a lot more predatory labs than Theranos out there...