So confused - igenex results & Lyme doc & family doc

Well, I'll just tell you, it's those types of docs that are the most damaging - the ones that have no clue about Lyme, but put doubt in your head when you have so many Lyme specific bands that have shown up as either IND or positive. You very much have Lyme disease - Bands 25,31, & 39 are all Lyme specific and Band 58 is one that we are seeing more and more - it's a Lyme strain known to be in Europe, and now spreading, just like all the other strains. You certainly can have a PCR test done, but they are not that reliable, as you have to have a large amount of bacteria in your blood stream at the time of the blood draw for it to show up.

If you don't wish to use the supplements that your Lyme literate doctor is trying to give you - it's not likely a condition that you have to agree to in order to see her. You can tell her that you wish to see if you can find a better price. I do this to my doc so often that she now just tells me what she thinks I should take and then tells me what she charges for it and let's me decide.

You can also ask her to explain exactly what it's supposed to do and that you would like to research it more on your own.

And your Integrative doc is telling a fib when he says it's the way "big pharma used to be" they still are that way - and they still visit all the doctors that they can - and take them out to expensive dinners and more. That's how drug reps work. The pharma co's believe that if they don't openly promote their meds, they won't be used - and so they can't get the big bucks for their newest drugs. I've always requested drugs that were on the market for at least 10 yrs in order to avoid that - and to have a better track record on the drug. Here's a site where you can go and find out if any of the docs that you see are getting those "perks" from drug companies:
www.propublica.org/series/dollars-for-docs

The reason the labs are challenged like that is simply because of how political the "Lyme Debate" is - nothing more. Those labs that are considered "suspicious" are the only ones that take the time to actually train their techs on how to perform these tests properly - remember, the Lyme bacteria is one of the most complex bacteria around. Most bacteria replicate in hours or days - the Lyme bacteria takes weeks to replicate as just one example.

The labs that are being questioned also use the proper testing medium (the stuff in the petri dish) for Lyme, not just whatever they have in the lab, and make sure to not rush the testing - which is why it takes so much longer to get results back from those labs as opposed to the week for Labcorp and Quest.

Obviously, this is a choice for only you to make, but I would encourage you to consider these points carefully. If you wish to change LLD's, that also is something that you could do - but I surely wouldn't encourage it if you were basically comfortable with her before this doc said anything.

Lots of Lyme patients get told this by those docs that refuse to believe that Lyme is really here and is as big of a problem as it really is. There was an article that came out stating that "Lyme Disease has surged 320%"
time.com/3959736/lyme-disease/

Traveler, thank you. It's really just what I needed to hear :)

Moonflower, just wanted to respond to the other part of your letter, where you list the concerns you have about your current Lyme doctor. Specifically, "I say three words and she jumps in with some new thing I have to start taking."

That scenario sounds real familiar. I was treating with a similar physician for over a year. When I wasn't getting better, in fact getting worse, it was always, "Try this (incredibly expensive) new supplement." I was the one who requested a lyme test which came back positive.

Has she given you a prognosis? Are you being treated with ABX as well? Has she told you what to expect from different supplements and how long before there should be some effect?

While not as bad as the numerous con artists out there (some of whom claim to be Lyme doctors) preying on a group of very vulnerable people, there are unfortunately also physicians who may be well intentioned but are nonetheless quite happy to take your money for appointment after appointment and bottle after bottle of things that are not helping you. Just because someone believes in chronic lyme does not necessarily make them a good physician.

I hope you are in a part of the country where you can look around for other LLMDs or LLNDs. It makes such a huge difference to really believe that you're getting correct treatment. Good luck!

I'm with ziege on this. I believe that it's important to feel confident in your care provider. If you don't completely trust that your health is their primary concern and interest find someone else if possible.

You waited for her for 40 minutes and she's the one that lost patience? Wow. I don't have a problem with Dr's running behind. Often that means their spending as much time with each patient as they need. Those that do that typically have supplies to entertain kids and adults during the wait.

To lose patience after inconveniencing you, the ill paying client is beyond unprofessional. Look for someone else. Still start the abx.

Moonflower78 said...
Yeah, maybe I do need to find a doc I like better.

She has talked a little about prognosis but our appt got cut short last time and I didn't have a chance to think or ask all the questions I wanted too. Frustrating. She had me wait for an hour and 40 minutes and my kids started to melt down; she lost her patience and left before I could pull everybody back together.

She gave me abx too but I haven't started them yet.

Thanks for the input.

Good grief!! I would definitely encourage you to find a better, more compassionate doctor!! I have a tendency to go into my own ranting when I'm kept waiting for more than an hour at a doc's office myself!! The only time I make exceptions is when I get my appt time wrong and know that I did. That's just ridiculous to be treated that way unless there was a legitimate reason for her delay - like an emergency.