2nd LLD and very different approach

I was lucky enough to be able to see a 2nd LLD in my area (well, it was another 3 hour drive in the opposite direction but I'm still thankful she squeezed me in). My husband and I clicked with her, and her treatment plan was similar to the 1st LLD we saw, but includes a LOT more "stuff" (she has detox protocols she wants be to follow, some herb and supplements she wants me to use, etc). I really think both of these LLDs are amazing, and I am not putting down the 1st one in any way, I just felt like he was skipping some important parts of treating this disease (he didn't even tell me to drink more water while undergoing treatment which I thought was just a little odd).

So, in my heart I feel like this 2nd dr is the way to go, but I have NO IDEA what all the stuff she prescribed is and wanted to just run it by you guys to see if anyone has taken anything similar or heard of them used during lyme treatment? Sorry, the list is a little loooooong. Keep in mind, I saw my bulls eye rash 10 days ago and took doxycycline 100mg 2x/day for 7 days (which just ended, and which both LLDs agree does nothing to kill the bacteria at that dose).

Abx:
Ceftin, Zithromax and Tindamax (the same idea as the 1st LLD - to kill the bacteria in its 3 forms)

Probiotics and sac twice a day

Vitamin D, Adrenal Essence (adrenal support which has cordyceps extract, rhodiola extract, PABA and ginseng extract), Toxex (which has argentum nitricum, bryonia cretica, clematis recta, echinacea, galium aparine, hydrastis candensis, ledum palustre), Citrus Pectin

If I herx (which she thinks I will, even though the first dr didn't think I would and didn't mention any ways to cope with it if I did) she gave be a list of 4 herbs/supplements that could help.

She also added NO SUGAR even from fruit, NO GLUTEN, exercise (weight lifting/muscle toning only no aerobic) at least 20 mins 2x/week and no alcohol or smoking (which I never did anyway).

She also said at 4 weeks she wants to do blood tests to check my liver function, hormones, etc to see how I'm handling treatment. At 6 weeks she wants to do the IGenex lab tests for lyme (western blot IgG, Western Blot IgM, Lyme IFA, PCR Serum, Whole blood) and co-infections and at that time re-evaulate my tx plan (either stop if I show no bacteria or continue).

You are talking to a girl who has never taken a single supplement or herb so the bag of stuff she sent me home with was overwhelming to say the least!

The 1st LLD we saw wanted me on 3 antibiotics for 8 weeks (zithromax, plaquinil and omnicef) with probiotics and saccromycees supplements and thought it was useless to test at any point since the tests aren't sensitive enough.

Hi Sarah!
I was only bitten about 10 days ago (well, 10 days ago is when I first noticed the EM rash, not really sure when the bite happened since I never saw the little stinker) so I haven't been tested at all yet since everyone says it takes about 6 weeks for any antibodies to show up on the tests. So I'm starting treatment based on clinical diagnosis only (EM rash and my symptoms). The testing at 6 weeks would be to see if the bacteria is still there (or I guess my antibodies??)

I'm totally new to this so the only info I have is what I've recently read and what the LLDs are telling me, so forgive me if I have it completely wrong! Lyme has quite the learning curve!

The way both LLDs explained it to me is that because my treatment was started so early (specifically within 2 days of the EM 1st popping up), if the antibiotics work my lyme tests should always come back negative (no detectable antibodies in my system). Both explained to me (not sure if this is true) that there is a window of about 14 days after the bite where if treatment is started the bacteria is actually eradicated from the body, instead of just hanging out somewhere not doing damage but not totally gone.

So this lld wants to use the test as a sort of marker to see if the antibiotics I was given "worked" and killed the bacteria before my body even created detectable antibodies to it. If that is the case, I would test negative now (showing the infection is new and my body hasn't had time to create the antibodies) and still test negative in 6 weeks - actually 7 weeks post-rash (meaning the early treatment I received prevented my body from creating detectable amounts of antibodies at all).

If I test positive in 6 weeks she would want to continue the antibiotics a little longer because at that point it would mean that I had been infected longer than thought and the bacteria has had more time to move around my body. I guess one of the issues is the possible time lapse between bite and EM rash. I might have been treated within days of the bite, but if the rash took 30 days to present itself than the bite occurred longer ago and I've missed that 14 day "window". Does that make any sense??

It's so weird to me that the tests take 6 weeks to detect anything, but treatment is best started ASAP so you really need to start treatment before you get a positive test (in an early case at least). The 1st LLD didn't want to test me ever since he said he didn't care if I was positive or negative at that point, either way he would assume the antibiotics had worked if I had no symptoms. This doctor just has a different philosophy I guess and is assuming now that this is early lyme, but wants to confirm that using the test results at the 6 week mark.

If I was dealing with a long-term lyme infection than, as I understand it, I would already test positive, and still test positive in 6 weeks. Is that right?

That's interesting Girlie. She never mentioned that, and was actually specifically keeping me ON the antibiotics at the testing point so I will have to ask her about that.

Girlie, I've heard that before too, but my mom recently went to a LLMD who is one of the founders of ILADS who ran her testing while she was on abx. I think the abx help stir the antibodies actually? But again, what do I know.

I think that LLMD's are still figure it out as to when to do testing - during abx or wait the 3- 6 weeks, honestly. That's been a debate for several years now.

I'm so very happy that you have found a doc that you 'click with' - that is so important if you can find it. Trust in what they are telling you really helps!!

And I would agree that there is a chance that you could have a "real" negative test happen, if you were truly only just infected -but since you don't know for sure (not sure that any of us do anyway), it's good to be on the look out for other possibilites.

Congrats on a wonderful Doc's visit!!!

Remember to start off everything slowly. Too many changes are hard on a healthy body, and your body is dealing with a very complex infection.

Remember we are here to help answer any questions, give some support, help you find things and to vent to if needed!!

"The way both LLDs explained it to me is that because my treatment was started so early (specifically within 2 days of the EM 1st popping up), if the antibiotics work my lyme tests should always come back negative (no detectable antibodies in my system). Both explained to me (not sure if this is true) that there is a window of about 14 days after the bite where if treatment is started the bacteria is actually eradicated from the body, instead of just hanging out somewhere not doing damage but not totally gone. "

The theory is that the spirochete hangs out in the blood where the immune system can detect and react to it before it starts to burrow into tissues, organs. So, it would seem at first that you would only need to treat for the spirochete form but she's adding the cyst and biofilm tx as reassurance.

And yes, the EM rash emergence doesn't indicate WHEN you were infected, so you could already be past the lyme lifecycle.

Also, some LLMDs like to test after abx tx once you're past the lyme lifecycle (appx 6 wks) using the theory that abx and antibacterials like Olive Leaf Extract help "provoke" a more accurate immune response and boost the accuracy of the serology tests, which needs a functioning immune system by creating the appropriate volume of antibodies.

I wonder if you're seeing my LLMD (only a handful in SoCal). Regardless, you seem to have a great handle on both of theses LLMDs methodologies and the testing issues.

I am so envious you are getting treated early. Please let us know how everything progresses!

p