My first visit with the Lyme doc yesterday - so many questions!!

I have mixed feelings about my first LLMD appointment yesterday. First of all, they messed up my appointment (after driving a hour and a half), and so I ended up seeing the Nurse Practitioner, not the actual MD. Does this make a difference?

She was really nice and supportive, and didn't doubt my symptoms at all. She was very knowledgeable about Lyme it seemed, to me.

She doubled my dose of doxy, and mentioned trying some pulsed IV antibiotics at some point. She ordered tons of labs, but isn't doing another Lyme test, since I already tested positive for that.

She looked at the supplements I was taking and told me that I could continue taking the garlic, resveratrol, etc., but it wasn't doing anything to kill the lyme. I told her that I was taking it to boost my immune system, and she seemed like it didn't matter much either way.

She said she didn't want to overload me with supplements yet, until all of my labs came back. So, other than doubling the doxy, she is having me take Biofilm Defense and a probiotic as well.

Also recommended something called Saccaromyces, which she wrote was good bacteria for the gut, but I think it's actually yeast.(?)

She was very reassuring that I would get better, and she is supportive of me trying to go on short term disability while I'm healing right now.

All of that being said, I didn't get a total warm and fuzzy with her. She seemed to doubt that I have had LD for longer than about 6 months (last summer), due to having only IgM bands on my lyme test. She seemed to be giving more credence than I had expected to the mainstream lab results.

I didn't want to be disagreeable, but I told her that I thought that having just positive IgM bands didn't definitively mean a recent infection, it could just be a recent flare up.

I printed off for her a complete list of my symptoms and a medical history, detailing when I feel my lyme symptoms began, but she wasn't especially thorough. .

One of her theories was interesting, in that she doubts I had lyme before last summer, but possibly a virus, like Epstein Barr, or something. I'm not sure why that seems more likely than the lyme I currently have, which follows the same symptoms.

So, I felt a little unheard in that sense. Also, she didn't have any strong diet recommendations, and I had to bring it up.

She basically just said to eat healthy, whole foods. Try to avoid gluten, but didn't seem to think that the diet I'm currently doing (no sugar/caffeine/gluten/dairy/alcohol) was totally necessary.

She didn't seem to know why I was taking some of the herbs recommended in Ken Singleton's book, The Lyme Disease Solution. (garlic for immunity, beta glucan for NK cells, and quercitin to help detox). She wanted to focus on getting rid of biofilm, which I'm not too familiar with.

She would like me to do a weekly (as I can afford it) vit C IV. Does anyone have experience or recommendations about this? Is this necessary or would be nice to have?

They are sending my blood to Life Labs, which is local to the Springfield, MA area. I have the option of doing igenex labs, but insurance won't cover them. Is it worth it to do the igenex labs at some point for the coinfections?

I am having my son tested today at the same place, but by the doctor I was supposed to see yesterday, so I will try to ask him his opinion. I believe I will be seeing him from now on, also.

I have a back up appointment with another LLMD who was recommended to me, for early Feb, in case this one doesn't work out. What do you all think?

I think it may be a good place to start, and she did make some changes to my meds. I'm not convinced she'll be my long term care provider, but I like that she supports me doing STD.

I know that this is a lot of info, but I look forward to anyone's comments, advice, and experiences with any of this. Feedback, please! Always helps to have a sounding board.

Miss K,

Sorry this was less than wonderful, but it does sound like some help!

Detox has been critical for me..all my docs have said this. And I think the diet you are on is also, if not critical, at least very helpful. It is what I also do.

Great that you asked so many questions..and like samj says..know more than the NP! I have been in that position quite a bit.

I ended up with a primary LLDC and a secondary LLND. Both had strengths and I saw one regularly and had phone consults with the other. These docs are here to serve us! Use them however it is best for you, is my opinion :) And keep going until you find one that is a good fit...which is what I hear you are doing!

So..I do not know about abx, but can address some of the other things.

Sacchromyces boulaardi: it is indeed a yeast and it is also great for the gut..will actually help the good flora and keep the candida down. I know it sounds questionable..I also questioned it, but many docs recommend it. No worries here.

Biofilm: This is a big deal in lyme world :) the bacteria form colonies (candida can also) and is difficult, if not impossible for immune system and abx to get to it. You need to take a biofilm buster to break them up. So this is good. I have herxed on them before, though. When they break up the biofilm, the bugs can then be killed...which releases toxins. All the more need to detox.

co-infections: At least one lab was sent to Fry labs for me...came back with an actual photo of the blood and they could see biofilm and bartonella. A good Lyme doc will know where to send for co-infection test. Good that you will talk to the actual LLMD when you go in with your son.

I am on high doses of a sublingual gel vit c. Have never had IV's. But I think Vit C is a good thing in general

Good luck!!
Nancy

Just want to add that Saccromyces is absolutely necessary while on abx. It is a "good/healthy" yeast and will prevent candida infections.

Sounds like things went okay at least! I say go with your gut - you need to have confidence in your doc - no matter who they end up being!