• Log in with Facebook Log in with Twitter Log In with Google      Sign In    
  • Create Account
  LongeCity
              Advocacy & Research for Unlimited Lifespans

Photo

Some thoughts about Lyme

lyme

  • Please log in to reply
2 replies to this topic

#1 FunkOdyssey

  • Guest
  • 3,443 posts
  • 166
  • Location:Manchester, CT USA

Posted 08 December 2016 - 07:27 PM


People ask me for my current thoughts on Lyme in private messages from time to time.  I thought it might be worth posting them here for a wider audience.

 

If you suspect you have Lyme, here's what I would suggest:

  • If your symptoms began shortly after a tick bite, there's a good chance you have lyme or another tick-borne disease.
  • If you suffered a bulls eye rash after a tick bite, you definitely have lyme.
  • If your symptoms have no temporal relationship to a tick bite, you should not strongly suspect lyme, but it is worth getting tested by validated methods.
  • The standard ELISA and western blot test kits for Lyme are reasonably good.  Read this paper for a thorough appraisal of their value and potential pitfalls: https://www.aldf.com...asi_article.pdf
  • Do NOT run specialty tests from labs that specialize in Lyme diagnosis.  These generate false positives like crazy (Igenex for example is particularly bad). I don't know if there is deliberate collusion between them and Lyme specialists but either way the tests are unreliable.
  • I don't think empiric trials of antibiotic therapy are a great idea if you don't have a positive test result or symptoms temporally associated with a tick bite. The risks of antibiotic therapy are hugely underplayed in the lyme community.  You can do massive irreparable damage to your microbiome that can make you far sicker than you are now.  The list of diseases associated with or caused by dysbiosis is essentially the entire list of chronic diseases that plague modern western civilization, everything from allergies to inflammatory bowel disease to diabetes and everything in between.
  • If you do have a positive test and commence antibiotic treatment, pay close attention to your symptoms.  If the antibiotic does not change your condition positively within a reasonable timeframe, DO NOT CONTINUE TREATMENT.  There are people who advocate months and years of antibiotic therapy, with two and three drug combinations, believing improvement is just around the corner if they can stick it out longer or add another antibiotic to their cocktail.  This is terribly misguided -- much damage has been done and many people have been sickened further by this mentality (I present myself as exhibit A).
  • Avoid lyme specialists unless you have test results and a response to antibiotics that makes you certain you have lyme.  They are better suited to treating tough cases than diagnosis.  If you are familiar with the expression, "when you're holding a hammer, everything looks like a nail," then you understand why they think everything looks like lyme.

This is the advice I wish I had when I was younger.  The problem is that except for the bulls eye rash, the symptoms of lyme are non-specific and shared by MANY, MANY other conditions.  Latching onto the first diagnosis that seemingly explains your symptoms and offers treatment is an easy mistake to make.  Keep an open mind, educate yourself to all possibilities, run valid tests, experiment, make sober decisions, and don't lose hope.


Edited by FunkOdyssey, 08 December 2016 - 07:28 PM.

  • Agree x 2
  • Disagree x 1

#2 Omega 3 Snake Oil

  • Guest
  • 257 posts
  • 4
  • Location:USA
  • NO

Posted 09 December 2016 - 03:27 AM

  • The standard ELISA and western blot test kits for Lyme are reasonably good.  Read this paper for a thorough appraisal of their value and potential pitfalls: https://www.aldf.com...asi_article.pdf
  • Do NOT run specialty tests from labs that specialize in Lyme diagnosis.  These generate false positives like crazy (Igenex for example is particularly bad). I don't know if there is deliberate collusion between them and Lyme specialists but either way the tests are unreliable.


    Disagree with the first, source on the second?

    Igenex doesn't give "false positives", it gives a variety of bands and you need certain ones present for it to be considered positive. Igenex was what got me looking into Lyme, as soon as I tried herbals I had a strong herx reaction, followed by marked improvement. There's no way I didn't have Lyme, though now I'm worried I have something else on top of Lyme.

Edited by Omega 3 Snake Oil, 09 December 2016 - 03:29 AM.


sponsored ad

  • Advert
Click HERE to rent this MEDICINES advertising spot to support LongeCity (this will replace the google ad above).

#3 FunkOdyssey

  • Topic Starter
  • Guest
  • 3,443 posts
  • 166
  • Location:Manchester, CT USA

Posted 22 December 2016 - 11:38 PM

 

Igenex doesn't give "false positives", it gives a variety of bands and you need certain ones present for it to be considered positive. Igenex was what got me looking into Lyme, as soon as I tried herbals I had a strong herx reaction, followed by marked improvement. There's no way I didn't have Lyme, though now I'm worried I have something else on top of Lyme.

 

 

Some discussion of the acknowledgement of false positives by Igenex, which prompted them to make some changes to their criteria for a positive test: http://www.lymeneteu...opic.php?t=5684  Seems to be a moving target.

 

You'll also generally observe that almost no one with chronic Lyme ever cures it despite the truckloads of antibiotics.  And the possibility that any improvement seen with antibiotics is due to anti-inflammatory effects of the medication, therapeutic effects on SIBO (a far more common condition), or other reasons unrelated to Lyme are rarely considered.  Feeling worse on antibiotics due to the nuclear bomb dropped on the microbiome or simply side effects of medication are chalked up to herxheimer reactions.  Some antibiotics like the tetracylines have antidepressant effects that may accidentally help some people. It's all very confusing for the sick layperson but escaping from that misdiagnosis can be the first step toward real improvement.


Edited by FunkOdyssey, 22 December 2016 - 11:51 PM.

  • like x 1
  • Agree x 1





Also tagged with one or more of these keywords: lyme

1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users