LLMD visit

So, I just had my first LLMD visit and I was impressed. He was very thorough in his review and is fairly certain I have Lyme Disease (boo). He ordered the Western Blot from Igenex which will be sent via overnight Fed Ex tomorrow morning. He also gave me a new Rx for doxycycline but double the dose I've been on for a week now. He gave me 200mg twice daily for 30 days. He said Igenex is a little backed up right now and some results are taking 3 weeks which is a bummer as I'd like to know ASAP.
I've got a follow up appointment in 4 weeks. So we'll see what the tests say. I asked him what we'd do if the test was negative and he said that he'd either do a PCR, which I'd have to stop the antibiotics to do, or he'd test me for other infectious agents. Though he did say that even if the WB is negative doesn't rule out LD.
I'm not sure what I'm hoping for more: a positive Western Blot so I'd know for sure what's wrong, or a negative result which still may mean I have LD or something else. I think maybe I'd rather have a positive just so I don't have to pay for more tests. Sounds weird, I know.
He also said if LD is confirmed then he'd put me on at least 1-2 more antibiotics and treat until symptoms are gone then an additional month once symptoms are gone. So that's good. He's definitely the right doctor for me and is EXTREMELY nice and very intelligent.
He also gave me 2 months of a probiotic (Ther-Biotic Complete by Klaire Labs).
Any thoughts?

Oh, and for Stiles, he said the weird blisters on my hand were most likely from dry skin. Though that doesn't mean yours aren't related to LD. It sounded like yours were a lot worse than mine anyway.

Taking the doxycycline should give you a good idea of where you stand: a herxheimer reaction will be a for sure indicator of the presence of Lyme.

It's not weird that you are hoping for a positive test result. Having an answer and a plan of attack is much better than the wondering, waiting and worrying. And as awful as Lyme and its treatment is, the other diseases your symptoms are pointing to do not have as good a prognosis.

As for your probiotic, it is important to take it two hours after each antibiotic dose. A lot of people find they have to find a probiotic that suits them -- it isn't necessarily an expensive one. And it is recommended that you get a probiotic from a cold source (sold from a fridge), that has a lot of different organisms in it. Personally, I like to rotate through a few different types.

Well, you are on your way. Hold on to your hat, it may be a bumpy ride!

Thanks for the comments! I appreciate it.

Just barfed on my way to work this morning. Not sure if it's due to the antibiotics or something else, but barfing in the middle of bumper-to-bumper traffic is no fun (not that barfing anywhere is fun).

This is gross but it looked like spotted orange juice. I could see some specks of blood in there so not sure if I need to be worried about that. The only thing I had to throw up in was a Ziplok sandwich bag which is why I got such a good (disgusting) view. Surprisingly I almost filled up the entire bag. Which was weird considering I hadn't eaten anything.

Anyhoo, I think I need to make sure I eat something before I take the doxy. I've been fine on the lower dose without any stomach issues so either the increased dose is too much for my stomach or I'm just experiencing new issues.

Any ideas?

Thanks Traveler.
Not sure why the doctors insist on taking it on an empty stomach. It was quite the experience. Don't think I'll be doing that again.
I know I shouldn't take it with dairy but what do others out there on 400mg eat before taking the doxy? I want to make sure I don't decrease the meds effectiveness.

Jeff, it's funny because I tried taking my morning 200mg doxy just a few days ago on an empty stomach, and it was ROUGH. I didn't hurl, but I was close. I will not be doing that again.

Great!!! If you begin to have issues again, raise the amount you eat slightly again. If you have heartburn from it or burp it back up a bit (), be sure that you sit completely upright for 30 minutes after you take it.

Personally, I had Lyme and company for 37 years before I was ever diagnosed with it. I was not bed ridden or completely overwhelmed the whole time though. I had periods where I was a "normal" kid - well as close to "normal" as I could ever get anyway!

I ran track, played Little League baseball, basketball, had a horse that I was with when I wasn't doing those things. My infections completely sidelined me only a couple of handful of times with fatigue, extreme knee pain, or this or that. It wasn't until I was 36 years old that I even came across the idea that it was all due to Lyme disease - and I was 48 or 49 years old before I ever knew what it was like without joints popping with every movement, arthritic aches in many joints, no extra fatigue after strenuous activity, no random cold or hot spots on my body, and so much more. I think we just get used to it when it comes on slowly or we have had it since childhood.

And considering that mosquitoes, biting flies, and even more can carry these infections, who's can say for sure that they weren't exposed in that manner?

Anyway - just my 2 cents worth......

Same here! I was shocked to find out that all those things I had gotten used to were actually symptoms of an actual condition!! All my doc's while growing up and as a young adult all told me I was just unique.

Once I healed the first time, I couldn't believe that my joints were actually quieter!!! Some didn't pop at all! And there were so many other things that I had just come to accept as part of me.

It's actually quite sad that we got used to it all.

Well, it's my hips that do that, but yes! It s*cks!

Nosila said...
I'm in the same boat. I believe I've been infected since I was a kid, but never sick enough to really understand that there was anything really wrong with me until fairly recently. Traveler, your story sounds so much like mine. I remember, as a child, showing off to my friends how I could make my joints pop on command. I was fairly active, helping out on the family farm as I grew up. But I remember how much I hated riding a bicycle because my thighs felt so weak that I could never keep up. Now my thighs are the main place I have muscle pain. Having a baby, and then trying for more, is what pushed my body to the limit and really triggered my symptoms. I finally got diagnosed this year, at 35. It's amazing how, when you grow up with it, your perception of normal is so different. At my first LLMD appointment, I was really struck by how many things I considered normal were actually symptoms.

it seems that you had your children while infected..I am just wondering how did that go please ? are they ok ? or infected ? and how you recovered ? did you breastfed them ?

Hi abenewhere1. My son is 3 now, and I breastfed him for his first year. My other pregnancies ended in early miscarriage, which I believe is because of Lyme. Earlier this year, my son started showing some symptoms, such as joint pain, fatigue, and digestive issues. I took him to my LLMD, who found babesia / protozoan (but not Lyme) by muscle testing. We have been treating him for babesia / protozoan for a couple of months now, and he doesn't show anymore symptoms. His next appointment with the LLMD is in a couple of weeks, and I'm feeling optimistic that he will be done with treatment then. As for me, I have improved quite a bit, but I feel like I still have a long way to go.