If you are doing a rash wrap-up, do not forget Ben Luft's finding that only four of 20 strains cause disseminated disease; the other 16 are rash-only For various reasons --imo on both sides, political-- no one brings this up.
It means that fewer cases of Lyme actually disseminate (reasons why activists may not mention) but it also means that of those cases that DO disseminate, much more of early Lyme is actually a treatment failure (reason IDSA types may not mention.)
It is a fact that helps no one win their political fight, but it is so important for patients to understand this.
Pam Weintraub, Cure Unknown -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- The STRAIN of lyme matters as to how serious it may or may not become. In your case, it seems very likely to already be showing itself as something to pay attention to - yet the test may not really help much at all.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
Two Standards of Care Revisited: Should Lyme Patients Have A Choice?
7th January 2015 - Blogs: Lyme Policy Wonk Lorraine Johnson, JD, MBA -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- What antibiotic are you taking, if you are comfortable answering? Others who know more about those might be able to shed light on the severity of your reaction to it vs. likely herxheimer.
If doxycycline, be sure to stay out of the sun, take WITH food (not dairy) and to keep your torso upright for 30 minutes after taking to help keep the GI tract calmer.
Good luck. I'm really sorry to hear all this. The good news is that you are addressing it - whatever it is - early.
If lyme you need to also be assessed for other tick-borne infections. Lyme rarely travels alone. Sorry. Good thing you are getting a good start but it's going to be a bit bumpy for a while. Hold on. -
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Keebler
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- Sorry to load you down. Be sure to earmark this as your reference thread. Just in case you are offered steroids, just say no. Here's why:
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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you can order the test for free.. you send $$ when you send in the bloodwork.
Do the blood draw early in the week so the blood doesn't sit around in the post office.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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- Fed Ex is the best carrier for the blood test from the collecting lab / blood draw to Igenex.
Be sure the blood draw is done to specifications and that the Fed Ex pick up time from the lab is considered as to the time you go in for the draw so they have processing time.
So many tests can be ruined if all the steps are not followed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keep in mind you won't test positive until your body has time to react to the bacteria. Somebody correct me if I'm wrong but I believe 4-6 weeks after the bite.
And as already mentioned you want Western Blot, not ELISA. Neither is 100% accurate but Western Blot is the way to go. It's beyond me why the even bother with ELISA, it must be a cost thing because they know how inaccurate it is but will still swear by it until the sun goes down.
You're in Texas so isn't Rocky Mountain Spotted Fever common there too? That's from ticks as well.
You also need to be aware of co-infections. Ticks can give you more than Lyme. Babesia, Bartonella, and Ehrlechia to name a few. I'm glad your brother is a physician, we usually have to fight as our own lone advocates. Hang onto him.
Best of luck, I hope you feel better.
Posts: 99 | From Cali | Registered: Dec 2011
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posted
Whether the test comes back positive or not, you sound symptomatic for Lyme. Is your brother familiar with the ILADS guidelines for treating it?
Also you can check for the symptoms of the other co-infections listed above. You have the option to test for them too.
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WPinVA
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Sorry you are going through this. Be sure you are also tested and evaluated for co-infections - babesiosis, bartonella, etc. Just as with Lyme, these tests can come back with false negatives, so the testing isn't the end of it, but it's a start.
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